========================================================================= Date: Sun, 8 Mar 1998 00:21:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: digests Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
SETAPERTNODIGESTS ========================================================================= Date: Sat, 7 Mar 1998 23:45:03 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: YOUTH LEADERSHIP DEVELOPMENT CONFERENCE Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi, Here's a forward that some of you affected people might be interested in. It's for people with disabilities ages 17-24. Lark >---------- Forwarded message ---------- >> REQUEST FOR APPLICATIONS >> NATIONAL COUNCIL ON DISABILITY >> YOUTH LEADERSHIP DEVELOPMENT CONFERENCE >> JUNE 22-24, 1998, WASHINGTON, D.C. >> >> Dear Sirs/Madams: >> >> Attached please find an application form for the National Council on >> Disability's (NCD's) Second Annual Youth Leadership Development >> Conference in Washington, D.C. NCD is pleased to host this event from >> June 22-24 at the Washington Renaissance Hotel in Washington, D.C. >> NCD's goals for the conference are to: >> >> (1) create a model conference that empowers youth with disabilities >> and their families by establishing a base of knowledge and contacts to >> facilitate on-going education and training which includes federal >> disability policy and disability civil rights laws, self-advocacy and >> ability to access enforcement, technical assistance resources, and >> other government supports and services, for youth participants and >> their families; >> >> (2) involve youth with disabilities who reflect geographic, >> racial/ethnic, and disability diversity; >> >> (3) build alliances within and external to the existing disability >> community through a mentoring process; >> >> (4) demonstrate assistive technology as a tool to enhance access to >> education, employment and independent living with methods focused on >> specific problem resolutions; and >> >> (5) obtain information and recommendations from youth participants >and >> any accompanying family members in public policy areas of school to >> work transition, transition from income supports (e.g., SSI/SSDI) to >> employment, rehabilitation, higher (post-secondary) education, >> secondary education, employment, income supports, health care and >> long-term services and supports, technology, and independent living. >> >> If you know of youth with disabilities who were between the ages of >> 17 and 24 on March 1, 1998, please encourage them to fill out the >> attached application and submit it, along with one letter of >> reference, by March 27, 1998, to Brenda Bratton, National Council on >> Disability, 1331 F Street, N.W., Ste. 1050, Washington, D.C. 20004. >> Any youth who requires help with their application form may enlist >> the help of another person to complete the form. Applications will >> be reviewed and youth selected to participate will be notified by >> April 30, 1998. >> >> >> This conference is being cosponsored by the Social Security >> Administration, Maternal and Child Health Bureau, Substance Abuse and >> Mental Health Service Administration, and Centers for Disease Control >> and Prevention at the Department of Health and Human Services, and >> Office of Special Education and Rehabilitative Services at the >> Department of Education. Stipends are available to reimburse travel, >> food and accommodation expenses for selected participants and an >> accompanying attendant or family member, if one is necessary. Also, >> if organizations wish to sponsor youth to attend, NCD welcomes such >> sponsorships but requires that sponsored applicants submit a >> completed application form by the deadline. Thank you for your >> assistance in identifying qualified applicants. Any questions may be >> directed to Brenda Bratton at NCD at 202 272-2004(v) or 202 >> 272-2074(TTY). >> >> Sincerely, >> >> >> Marca Bristo >> Chairperson >> National Council on Disability >> >> Attachment >> Dear Future Leader with a Disability: >> >> Are you between the ages of 17 and 24? >> >> Are you interested in learning about the disability rights movement >> and federal programs that serve people with disabilities? >> >> Would you like to participate in a national discussion about public >> policy affecting youth with disabilities? >> >> Would you like to hone your leadership skills? >> >> If so, apply to participate in the National Council on Disability's >> Second Annual Youth Leadership Forum in Washington, D.C. on June >> 22-24, 1998. The form is attached, and must be received along with a >> letter of reference by March 27. >> >> APPLICATION FORM >> NATIONAL COUNCIL ON DISABILITY >> SECOND ANNUAL YOUTH LEADERSHIP DEVELOPMENT CONFERENCE >> JUNE 22-24, 1998 >> WASHINGTON, D.C. >> >> NAME________________________ ADDRESS____________________________ >> _____________________________________ >> DATE OF BIRTH _____________ >_____________________________________ >> >> PHONE _____________________ EMAIL ADDRESS _________________________ >> >> SCHOOL (HIGH SCHOOL/POST-SECONDARY) _________________________ >> >> GRADE LEVEL __________________________ >> >> RACE/ETHNICITY __________________________ >> >> DO YOU LIVE NOW OR DID YOU GROW UP IN A RURAL AREA? YES NO >> >> ARE YOU A PERSON WITH A DISABILITY? YES NO >> >> IF YOU ARE A PERSON WITH A DISABILITY, WHAT TYPE OF DISABILITY OR >> DISABILITIES DO YOU HAVE? >> ______________________________________________________________________ >> _ >> ______________________________________________________________________ >> _ >> >> HAVE YOU HAD ANY EXPERIENCE WITH THE FOLLOWING PROGRAMS (PLEASE CIRCLE >> THE ONES THAT YOU HAVE HAD EXPERIENCE WITH)? >> >> SPECIAL EDUCATION SOCIAL SECURITY DISABILITY BENEFITS (SSI OR SSDI) >> >> REHABILITATION MEDICAID NON-DISABILITY-RELATED >CASH >> ASSISTANCE >(AFDC/TANF/OTHER) >> >> >> Second Annual Youth Leadership Development Forum Application Form >> (page two) >> >> WHAT DO YOU HOPE TO GET OUT OF THE CONFERENCE, AND WHY DO YOU THINK >> YOU SHOULD BE SELECTED TO PARTICIPATE? >> ______________________________________________________________________ >> ________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ________________ >> ______________________________________________________________________ >> ________ >> ______________________________________________________________________ >> ________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> ______________________________________________________________________ >> __________ (please try to limit your response to no more than 250 >> words) COMPLETED APPLICATIONS, ALONG WITH A LETTER OF REFERENCE FROM A >> PERSON NOT RELATED TO THE APPLICANT (E.G. TEACHER, MENTOR, PEER, >> COUNSELOR, ETC.) MUST BE RECEIVED BY NCD BY MARCH 27, 1998. COMPLETED >> FORMS SHOULD BE SENT TO: >> >> BRENDA BRATTON, NATIONAL COUNCIL ON DISABILITY, 1331 F STREET, N.W., >> STE. 1050, WASHINGTON, DC 20004, 202 272-2022 (FAX) EMAIL ADDRESS: >> aimparato@ncd.gov >> >> ---------- >> End of Document > ========================================================================= Date: Sun, 8 Mar 1998 08:53:47 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Dr. Upton's Book Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn, I'll put the 13.00 in the mail ASAP...plus a little picture of m cutie..please send a pictue of Andrew w/ the book
Jenn ========================================================================= Date: Sun, 8 Mar 1998 09:02:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
Well, as far as I can remember about feeling this lousy..sleep when you can, eat even if you feel you can't, and be genourous w/ fever reducers..I Loooove Niquol (they don't say it helps you get your zzzzs for nothing) and they have a daytime formulas if you must come out of the cave into the land of the living. I feel for you..I had it myself one night/day while Joe had to work 24 hrs..so it was me and Jordan to tough it out!!!!
Speaking of..any teething advice out there??? It seem my little 6 month old (can you believe hes already 6 mos????) has decided he wants to be a big boy and munch on dads Oreos..and the only way he can do that is if he has teeth!! HELP!!!!! He doesn't take well to the nusiance.....handled having his head split open much better!!!
Hope everyone is doing well..Mrs. Robyn..If I remember your due date is anyday now??? Hope all is well and your resting comfortably..like you could do either..much less the 2 at the same time..and be 8-9 mos. pregnant!!! hahahahaha....I still remember
Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 8 Mar 1998 11:56:07 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joanne, the best thing for me when I am feeling like this is just plain ol sleep. Dont worry about not doing much of anything. If you try to ignore being sick, from my own experience, you will only prolong it. Sometimes something light in the tummy is ok, but see what your appetite feels like. :-) Hope your feeling better soon.
Hugs, Robyn
At 10:01 PM 3/7/98 +0000, you wrote: >Hello all! > >If anyone out there can remember the "motherly advice" that goes >something like feed the fever...I could sure use it! I woke up feeling a >little sluggish and brushed it off thinking "it's been a long week". By >1:00 p.m. I was in such a fog I about broadsided this poor lady when I >missed a stop sign. I was in unfamiliar territory due to a detour and >never saw the sign. When I got home I took my temp., 100.2 ugh. No >wonder I felt like a freight train plowed me over. After a 3 1/2 hour >nap, I'm awake, but still have the aches. The fever has gone down some. >My family has been passing this bug around. I thought I was going to be >spared, but I let my resistence down this week and that's all it took! I >ate a bite of dry french toast, and am now deciding if I will be >regretting it. > >Hope everyone is happy and healthy! > >Joanne, in Ohio > >_____________________________________________________________________ >You don't need to buy Internet access to use free Internet e-mail. >Get completely free e-mail from Juno at http://www.juno.com >Or call Juno at (800) 654-JUNO [654-5866] > ========================================================================= Date: Sun, 8 Mar 1998 15:16:25 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Various Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-03 21:49:21 EST, you write:
<< Do Apert children go for occupational therapy as well as physical therapy? If so, what is the normal beginning rate? Once a week, twice a week? >>
Jack and Raquel, Belatedly welcome! I have been sick with the flu so am very far behind on the email. I can't remember which state you live in but before you go through your insurance (and co-pays) for all this therapy, check with your state's early intervention program. You should have services available without co-pay. Your pediatrician or social services at your local Children's hospital can put you in touch with the right people- even the school system. It can be a real struggle to get services started (or so I have found in California) but it won't kill you with copays or add to insurance lifetime caps. Evan finally started with PT last week after working on it since Nov. Our snag is transporting him and his nurse to thereapy when I have to work. It now looks like this will be accomplished by getting him into the infant program through the school district which incorporates PT/OT/Speech and provides transportation.
Having both PT and OT is appropriate. Some programs use a transdisciplinary model where the treating therapist is one or the other but incorporates elements of both disciplines. The other discipline is then represented in the semi-annual evaluation process and makes recommendations to the treating therapist. As both have differing areas of concentration (ie gross motor vs fine motor skills) I think having both treating your child is preferable. Do they come to your home? With small ones, this is often an option which would help in the scheduling department. If not, I'd suggest starting with both and seeing where things go- then cutting down one or the other or both as you go along if necessary. Just be real clear about insurance coverage and how much is actually covered and for how long. Often insurance coverage of therapy is poor (hence the adviseability of the state services) as they cut off when the child "plateaus" for awhile. Or there is an annual or lifetime limit. Check out all your options before you start.
Marianne Camous (Mother of Evan Milburn - 20 months ) San Carlos, CA ========================================================================= Date: Sun, 8 Mar 1998 15:42:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Team meeting Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn, Out "team meeting" at Stanford was very different from that in Pittsburgh. In the former, we were sent an appt card and "scheduled" for the appropriate folks to see on that day- always the Plastic Surgeon, sometimes Speech therapy, one time Audiology, one time Dental, etc. there never seemed to be any "group" feedback. At Stanford we say everyone: the cranio surgeon, the hand surgeon-(not part of the actual team but also sees patients in the same clinic space the same days so is available if necessary),ENT, speech, dental, soc svc, psych (THAT was another story) etc. This was all coordinated by the admin asst and the Nurse Practitioner. They each gave us some info after their evals, then they all met for conference on every patient of the day. Several weeks later we received a copy of the team report. This also went to Evan's pediatrician, the early intervention folks, etc. It seemed much better coordinated.
The kicker is always read this stuff carefully. The Psych resident who met with us seemed a bit clueless at the time. In the course of discussion she asked me something where I mentioned that I had been treated with Zoloft (an antidepressant similar to Prozac) from time to time in the past when needed. When the report came out she had me listed with a history of Major Depression!! This is a separate Psych diagnosis with a separate ICD coding and very strict diagnostic criteria- none of which I fit. I initially found it amusing..then came to the realization that having this on paper could actually have repercussions in the future like inability to get health insurance or the need to have a pre-existing condition clause!! When I showed it to the NP from the Cranio team she was very apologetic and had the report rewritten and resubmitted it to the recipeints with an explanatory note!! Always read the fine print!
Good luck with Jordan's eval!!
Marianne ========================================================================= Date: Sun, 8 Mar 1998 17:28:57 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello everyone,
Marianne, TEN days!!!??? Ouch! I hope you are feeling better soon! I know what you mean about your head rolling off.
Thanks Karen for the "Nurses Orders". Trust me, I have been following them to the T!
I am up for my 1/2 hour energy surge and then it's back to bed. It is all I can take to walk from the bed to the computer which is about 10 yards away. I am "anxious" and always have been. I cannot stand to lie around all day. (I know, I know, that would be "The Life") During this surge, I had to check my mail. I always get some degree of comfort hearing from you all. The fever is hanging on, between 99-101. I hope to see my doctor tomorrow.
Just to clarify one thing.. I have Apert's. I not sure if everyone was aware of this or not. I not only have the facial difference issues to deal with but the "prove yourself capable, even though you do things differently" issue as well. I only had my thumbs separated, as I was born prior to a lot of the options available today.
My birds have discovered my presence. Great. They too are under the weather. I had them at the vet on Friday and came home with meds for both of them. Speaking of which, it's that time. I do not relish pinning two birds to the ground while I cram meds down their little throats! :-(
Joanne in It has been raining all day, haven't got a clue as to what the temp is, Ohio :-)
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sun, 8 Mar 1998 19:33:14 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: small party MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I went back to the hospital in Chattanooga today. There are 3 apert babies on the same floor, and when I showed up with Daryl, that made 4. The nurses were all stunned. Today was Andrew Barnes 2nd birthday, so we all partied together.
The parks are there because Levi got a staff infection in his shunt.
Andrew is there because he had a trach put in Wed.
Devin is recovering from his cranial reconstruction. I got to see his new and improved head. He looked GREAT!!! Kerri thanks all of you for thinking of her, and please don't forget her for the next few days will be tough. He comes out of PICU tonight.
Hope all is well with everyone!
Denise Graham ========================================================================= Date: Mon, 9 Mar 1998 02:31:25 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: softspot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello to everyone. Iwas wondering if anyone can tell me about the softspot after advancement surgery. Billy has two softspots, one one each side of his head. His doctor said this is what they wanted and that they will close in time. But I kind of remember reading about someone saying that their child had to have the surgery over because the doctor was not happy because the softspot was on the sides.
Also, I am concerned about the fact that he can not sit up for more than ten or fifteen minutes at a time and then he will fall over. He has been sitting upm for months now and I thought that he would be able to sit up by now. He can stand holding on to things but does not pull himself up. I have talked to his doctors about these things but they say not to worry and that he will in time be able to do these things.
One more question,he has a high palate and they also say that it does not need to be fixed anytime soon. Any thoughts on that?
We are thrilled to hear that BJ is doing so well. Hope everyday brings him closer to going home and that god continues to walk along side all the Harmons.
Karen ========================================================================= Date: Sun, 8 Mar 1998 20:59:42 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Hello all MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I never get to answer all the e-mails from our list family (I use the e-mail I have at my job) due to the short time I have to use it. Apologizes to all! But this does not mean I do not read them all.
Who is perfect?? No one, and I definetely agree with the concept that defects are not on the outside but on the soul and on hearts. I work for an institution that deals with coastal resources management, and I've met so many people with "defects"... they do not have respect neither for environment (plants, animals, earth) nor for the human being.
Reading Joanne's messages (and all of our other friends) always give me strength to keep on. I wonder if the people that consider they do not have defects could be as strong as BJ, or Marjorie, or anyone of us. I do not treat or consider that Albita has a "birth defect"... she is brilliant and a good and caring little human being! But now, after Joanne's words, I am thinking that we do need as parents to give our child the opportunity of express themselves and share with us how they feel about this.
Thank you Joanne for giving us a light on what will probably be our child needs. Thank you for being our friend, and thanks God we can have you close to us.
Elizabeth. ========================================================================= Date: Mon, 9 Mar 1998 09:01:27 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Eyes and Tearing
>I know we have spoken a lot about tearing lately, but we just came back from >the eye doctor. Emily's eyes still tear a lot and he suggested that during >her palate repair, sometime in May probably, that he would "jump" in on the >surgery and do a probe of the ducts. Has anyone had any experience with this? >Did it work? Is it worth it? Does it cause any pain?
>Janine
Krista has had this done twice, both times in conjunction with another operation. It has not been successful. Her doc's have aid that sometimes it works and sometimes not. Krista's nose is so messed up inside that the tear ducts just don't have a good place to drain to. They have been working on the inside of her nose, and by this summer hope to have that finished. At that point a probe may be more successful. She's never complained about pain from this. They usually leave a small tube in the duct for a while to keep it from healing shut, and this can give a small amount of irritation, but nothing bad.
Another partial solution was mentioned by an opthalmologist. The lower eyelids of Aperts kids tend to droop down a lot. Tears normally flow downhill along the eyelid to the tear duct. But if the eyelid droops too much, "downhill" may be away from the tear duct instead of toward it. In that case the tear just collects at the lowest point and then spills over onto the cheek when the eye can't hold any more.
He said it is fairly simple to build up the lower lid a little to correct this. In Krista's case, it isn't needed, but he said that had been helpful in others.
Bob Horning ========================================================================= Date: Mon, 9 Mar 1998 08:38:26 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: OT & PT
>Remember, no one knows your child better than you do!
>----Don
How mistaken you are, Don. We were once told by one of the therapists at school that they "were the professionals." This was in a discussion where we were describing specific needs that Krista had vs. their general goals that didn't appear to touch on those needs very well.
It was shortly thereafter that we dropped those therapy sessions from our schedule. We hooked up with some therapists that were so unprofessional as to listen to, and act on, our input.
Our experience has been something like the Kilner's. Krista figures things out on her own at about the same speed with or without the therapy. For the past two years she's had virtually none. This That's not to say that there hasn't been any benefit. Mary and I have gained a better understanding of what WE need to do in Krista's everyday activity to improve her dexterity, etc., but then the skills appear at her own time.
Bob Horning ========================================================================= Date: Mon, 9 Mar 1998 13:31:50 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Supplemental Security Income (SSI) Question for Pennsylvanians MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
During a recent meeting with our PA County Caseworker regarding renewal of our son's Medical Assistance (or whatever it's called now) card, she mentioned it would save us and her a lot of time and paperwork if we could supply her with a copy of a rejection letter from the SSI folk. (We would be presumably rejected due to income.)
Can anyone shed any light on this? The caseworker could think of no downside and stated our son's eligibility would not change. I'm all in favor of reducing paperwork but have concerns about turning over any governmental 'rocks' - we don't know what problems may crawl out...
I think remember reading on the LISTSERV about the 'loophole' that applies in certain circumstances but can't find a reference to it. ========================================================================= Date: Mon, 9 Mar 1998 16:10:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: softspot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen:
I know that Emily (7 and a half months) has two soft spots also, one on each side. I also get concerned. The one on her left side is really soft. The drs. say the same thing. It will close. They do, however, have to keep monitoring her skull with x-rays and 3-d scans to check on it.
I also remember reading somone saying they had to have a repeat cranial surgery because the soft spot didn't close. I don't know how old their child was.
As to the palate, can't help with that as Emily has a cleft palate that will be repaired approx. May or June.
Hope this helps somewhat.
Take care,
Janine ========================================================================= Date: Mon, 9 Mar 1998 16:12:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Eyes and Tearing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks for the input on the eyes and tearing to all who answered. I always appreciate any feedback from all of you.
Janine ========================================================================= Date: Mon, 9 Mar 1998 16:42:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: softspot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hmmmm..seems today is the day of questions regarding softspots. Jordan has an arc shaped one now..goes from ear to ear..basically where his coronal sutures were fused is now a huge softspot. We were told it will close in time, if not they can go in and "patch it" at around 5-7 yrs.
today we had a visit to the Dr. because the right side of Jordans head..where the softspot is was bulging a bit. The rest was fine..I don't even think I need to go into what I as thinking (hydrocephalus). They assured me it was fine..no biggie, but I was wondering if anyone else had experienced it? Like I told the Dr., it wouldn't have seemed so bizarre if A) it wasn't something that just developed overnite and B) if it had occured on both sides of his head..but it didn't. But he was acting fine, I jsut had to check. Anyway, any feedback on this would be appreciated.
Thanks in advance Jenn ========================================================================= Date: Mon, 9 Mar 1998 16:45:12 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: softspot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
oh..I forgot this on my last one..Jordan has a high palate..so they say..it doesn't look so high to me, but.....thats a whole different story. Anyway, I don't know the exact protocol, but there has never been ant discussion about attempting to change it. He eats fine, and is talking normally, so..I guess they think leave well enough alone. I really don't know b/c no one has ever mentioned it, other than me reading in his chart that it was present.
Jenn ========================================================================= Date: Mon, 9 Mar 1998 14:45:22 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: softspot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Karen,
I can briefly remember the topic on softspots too. Brenna still has one pretty big soft spot on her head too. I am not 100% sure, but, I believe the Dr's can add boney tissue back to the area if they feel it is necessary.
>One more question,he has a high palate and they also say that it does not >need to be fixed anytime soon. Any thoughts on that?
Brenna also has a high arched palate. Her Dr's called it a "cathedral palate". There is no cleft though. So far, they have not said anything about fixing it. It doesn't cause her major problems so I don't worry about it too much. It might affect her speech and eating issues some. The worst thing that has happened so far is, being a typical toddler, she picked up a small stick and stuck it in her mouth, it got caught crossways inside the palate. I could not see it, but with a flashlight, my husband saw it and then I got it out. Pretty scarey! Needless to say, she doesn't put much in her mouth anymore.
Hope all is well, Robyn Johnston ========================================================================= Date: Mon, 9 Mar 1998 14:45:23 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Eyes and Tearing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Another partial solution was mentioned by an opthalmologist. The lower eyelids of Aperts kids tend to droop down a lot. Tears normally flow downhill along the eyelid to the tear duct. But if the eyelid droops too much, "downhill" may be away from the tear duct instead of toward it. In that case the tear just collects at the lowest point and then spills over onto the cheek when the eye can't hold any more.
Bob, this explains Brenna's tearing to a T! She always has a droplet at the bottom of her eyelid. Especially when it is windy - she really tears. Very interesting, thank you. Hugs, RObyn ========================================================================= Date: Mon, 9 Mar 1998 14:45:20 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Hope everyone is doing well..Mrs. Robyn..If I remember your due date is anyday >now??? Hope all is well and your resting comfortably..like you could do >either..much less the 2 at the same time..and be 8-9 mos. pregnant!!! >hahahahaha....I still remember
Ha! Jenn, you got that right! If I get one out of the two I am a happy camper! Comfort - you should see how many pillows I bring to bed :-) My poor husband! Between me and the extra pillows, he gets a sliver to sleep on! At least the baby has turned the right way so my chances of a natural delivery are better now. I am praying!!! My due date is the 26th - like you said, right around the corner. I hope it comes sooner though :-) At least I am feeling pretty good most of the time - except I was quite a grouch last night ;-) grrrr!
Regarding Jordans teething and cookies, there are some teething cookies on the market that work with some kids. They don't taste quite like oreo's though. Brenna was never really interested in them much so ??? Actually, something that Brenna did like to gum to death was a piece of exercise tubing (or fishing and hunting tubing) You know that thick, hollow, tube like, stretchy material. You can buy plain pieces in bulk at the hunting/fishing dept or get colored samples from a company which produces exercise equipment. We tied a knot in the middle of it and she loved it. Also, tylenol is a life (sanity) saver. IT really helped us get through those nights when those poor little chompers are really causing a lot of pain.
Good luck, Hugs, Robyn J.
At 09:02 AM 3/8/98 EST, you wrote: >Joanne, > >Well, as far as I can remember about feeling this lousy..sleep when you can, >eat even if you feel you can't, and be genourous w/ fever reducers..I Loooove >Niquol (they don't say it helps you get your zzzzs for nothing) and they have >a daytime formulas if you must come out of the cave into the land of the >living. I feel for you..I had it myself one night/day while Joe had to work 24 >hrs..so it was me and Jordan to tough it out!!!! > >Speaking of..any teething advice out there??? It seem my little 6 month old >(can you believe hes already 6 mos????) has decided he wants to be a big boy >and munch on dads Oreos..and the only way he can do that is if he has teeth!! >HELP!!!!! He doesn't take well to the nusiance.....handled having his head >split open much better!!! > >Hope everyone is doing well..Mrs. Robyn..If I remember your due date is anyday >now??? Hope all is well and your resting comfortably..like you could do >either..much less the 2 at the same time..and be 8-9 mos. pregnant!!! >hahahahaha....I still remember > >Jenn(Tampa/St. Pete) > ========================================================================= Date: Mon, 9 Mar 1998 17:25:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joanne: chicken soup chicken soup chicken soup!!
Wish i could send you some, I just made a huge batch of broth and I'm sure it has to be loaded with something magical to cure what ails ya.... and the big bonus, it's a clear liquid so your flu would love it.
Also, drink more water than you usually do. Flush the bug from your system.
Hope you're up to snuf again soon.
Pat in Calgary (yikes, minus 15 on the C scale and we've got snow again!!) mom to the Peach (Tessier 4/5 facial cleft) in the WS gallery email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Mon, 9 Mar 1998 18:48:28 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: -- MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Joanne,
I agree, chicken soup is the best! You know what? About 3 months ago my husband and I started taking one tablet of Zinc Lozenges every morning and we didin't get cold or flu this season! We loved the discovery!!!! We hope you can get better son!
Love, The Ize Family. ========================================================================= Date: Mon, 9 Mar 1998 20:41:42 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: What a week :-(
Hello all!
In response to high palette, mine is very high. To the degree that it was blamed for my nose being developed crooked which therefore caused most of my sinus problems. I had septoplasty surgery two years to straighten my nose which resulted in significant improvement. As the doctor said after surgery, I reside in "Sinus Valley" there isn't a cure for that. So I'm still dealing with the drips now and then, but at least I can recover better now. When I was younger I would frequently get food caught up in the roof of my mouth and would require a q-tip to dislodge it. I'm not sure what changed because that doesn't happen much at all now and when it does, I can easily remove the object with my tongue. OH! I know! Braces! I bet my mouth was reformed with my braces and it's not such a narrow pitch. Hope this helps.
Andrea, I'm in Springfield, about 30 minutes from Vandalia.
Janie, yes, only my thumbs, 30 years ago.
Actually, I didn't give my birds the credit they deserve. They have been extremely cooperative all weekend. I have neglected them short of giving their meds. They "know" I am out of it and are being really patient.
My family and I could use your prayers. My grandmother passed away today. We all knew this was coming but that doesn't make dealing with it any easier. She lived a long 90 year life. She fell a few weeks ago and when they ran the cat scan to check for broken bones, they discovered the cancer that was in her abdomen had spread to her brain. She went through chemo and was doing ok considering. I thank God I was able to visit with her last weekend. She knew me and recognized the daffodils I brought but her conversational ability was zero. Now, both of my dad's parents are gone. My mom's mother is still here but lives in Florida.
This has been an incredible week. BTW, fever is gone. Now my heart aches.
Joanne, it's still raining, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Mon, 9 Mar 1998 20:45:39 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: OT/PT MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Marianne, I hope you are feeling better from that nasty flu....Thanks for the advise on the early intervention program....as a matter of fact my husband has already requested the forms from (Section H) a county funded program and we are waiting for them.
You are right about those co-pays, we are only in the beginning of March and we have already spent around $110.00 just on co-pays. Thats only counting one visit to the therapist for an evaluation, we haven't started the regular visits yet, we will wait to hear from the early intervention program. Nicole is 5 months old I hope there is no harm done if we don't start right away.
talk later....
Raquel..
P.S. We are from south Florida....Weston/Ft. Lauderdale area... ========================================================================= Date: Mon, 9 Mar 1998 21:13:35 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Supplemental Security Income (SSI) Question for Pennsylvanians MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hello,
We live in Pa too, and when I first moved here from Maryland, I applied, and supplied all the necessary paperwork to the SSI office for Kayla to get SSI. They of course denied us b/c of our income, but said Kayla could get a PA Medical Access card b/c of her disabilities.
We then went to the County Board of Assistance and explained our case, and they issued us a card. I can't recall if I had to take a denial from SSI or not. The card has come in very handy. We normally would not have received WIC, but b/c she had the card we did until she was three or four what ever the age is., plus it pays all her meds. Another benefit is that we live three hours from Pittsburgh where she get all her medical care from. The state reimburses us .12 a mile plus our meals when she has surgery, and if we need a hotel they well pay up to 35.00 a night. We send in a claim every time we go and sometimes in advance. I have never had to spend a night at a hotel so I'm not sure how that works. My husband and I both have insurance but something that isn't covered by one of our insurance will be covered by her card.
Hope this helps.
In the near future we are going to try and get SSI again now that we have an advocate who helps us out and gives us information.
Michele and Mark ========================================================================= Date: Mon, 9 Mar 1998 21:21:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: weather MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Dear Joanne,
Been meaning to tell you we are from the north west corner of PA, an I love to see the weather report you always post. Today here in PA it has done nothing but rain, rain and more rain. They the weather men are calling for temp to dip down in the teens, and I thought spring was coming after I saw all my flower popping up, I guess I am in for a rued awaking, especially if we get the snow they are calling for. Anyhow, I hope all goes well in your neck of the wood, including the birds!!
Michele ========================================================================= Date: Mon, 9 Mar 1998 21:30:55 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Sensory Intergaration MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_004D_01BD4BA2.A4D8D1E0"
This is a multi-part message in MIME format.
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Hello everyone:
A week or so ago I posted a message in reference to Sensory = Integration. I only received one reply and that was the person didn't = know what it was. I am wondering if any one has dealt with this before, = the yes's and no's can both reply, I am looking for any type of feed = back.
Thanks in Advance.
Michele
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello everyone:</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2> A week or so ago I posted a = message in=20 reference to Sensory Integration. I only received one reply and = that was=20 the person didn't know what it was. I am wondering if any one has = dealt=20 with this before, the yes's and no's can both reply, I am looking = for any=20 type of feed back.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Thanks in Advance.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_004D_01BD4BA2.A4D8D1E0-- ========================================================================= Date: Mon, 9 Mar 1998 18:31:11 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Good wishes:Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Good evening everyone:
To Joanne: Continued good wishes and good luck drinking lots of water and sleeping as much as you can. I am sorry to hear of your grandmother's death. You are in my thoughts and prayers.
To Robyn: Good luck with these fast moving hours as you move into delivery. All the best. You are in my thoughts and prayers.
Love, Scott ========================================================================= Date: Mon, 9 Mar 1998 21:48:06 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: Supplemental Security Income (SSI) Question for Pennsylvanians MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Mark and Michele,
We also applied for SSI and Medicaid when our daughter Nicole was born. Althouth we have insurance that is covering everything, we were recommended to apply for Medicaid if and when the insurance caps out. Regarding the SSI, we received one payment (as payment in full) to cover the maternity leave when my wife was not working (less income). Once we both were back to work, the SSI was denied because of our income.
Nicole was approved for Medicaid. We have no intention in using Medicaid, but it is there just in case my insurance does not pay or it reaches a catastrophic cap. Once Medicaid is approved, you have to basiclly reapply every six months (to make sure you have not won the lottery, and no longer qualify, haha).
The county assistance that you are receiving sounds like (state of Florida's) section h. We just contacted the office and they are sending us an application/information package. It was explained to us that they will help us with therapy assistance, etc. and then the school district will pick up after age three. I hope that we will qualify for this!!!
Also, where in PA do you live? My parents live in a small town approximately 3 hours from Pittsburgh (Cherry Tree). Cherry Tree is about 1 hour south/east of Indiana. I grew up there and moved to Florida in 1983. We usually go to visit once every 1-2 years. It would be great if we could get together on our next trip!
Jack Miller ========================================================================= Date: Mon, 9 Mar 1998 21:56:30 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: Sensory Intergaration
Michele,
Haven't a clue as to what you are talking about. Sorry.
It's snowing now, believe it or not. I thought spring was coming soon too!
Joanne, there is only One accurate weather predictor!, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Mon, 9 Mar 1998 21:10:39 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: What a week :-( MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Joanne, we are sorry to hear about your grandmother's.
Ize Family. ========================================================================= Date: Mon, 9 Mar 1998 19:18:22 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Career Stuff, Adult Issues . . . In-Reply-To: <19980306.230607.7014.3.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Joanne, Sorry for the delay in my reply . . . I also want to second what Pat said about chicken soup, and add echinacea and Vitamin C (with dose "to bowel tolerance", meaning that you can take about 1500 mg every couple of hours, until it starts to cause diarrhea, then back off (you're using most of it, and it won't irritate your tummy until you've taken in all you can use, and the rest will be excreted . . . You'd be amazed at how much of it you can use when you're body is fighting something . . . I just learned all that last fall . . . it seemed to really help . . .)
At 11:06 PM 3/6/98 +0000, you wrote: For example I >have been quoted as saying "I don't have the (fill in the blank) I want >because of my physical differences". Some my friends have told me that >it's bull #$%& to think that and I need to get off this pity party and my >lazy rear end and do something about not having whatever it is I want. >and I KNOW they are right. I just don't always take their advice >immediately! > Hmmmmm. I think I know what you mean, and there is some truth in it, but I'm going to play devil's advocate, and share some of my own experience on this one . . .
A lot (maybe most?) of my career confusion/disappointment comes from not knowing what I want, because I have the raw ability to do probably pretty much anything I set out to do (ok, so maybe not engineering or rocket science . . . ;~) In this job market, or in any other, really, these days, you have to know what you want, or people will put you into a box and tell you what THEY need you to be . . .
But, knowing what it would be that I'd really want to do is a really deep process, at least for most people (unless you're Albert Schweitzer or something and were born knowing!), and the process is supposed to be pretty well underway by college, when you hopefully get a chance to try internships, play out some of the fantasies that you had as a kid about what you wanted to "be when you grow up," and hopefully you go from there . . .
My problems around career issues, many of them, are really directly related to my cleft, in that first of all, during my childhood, I was very focused on survival, and getting past the next surgery, instead of really knowing what my real inclinations were. I was not, after about age 9 or so, doing a lot of light-hearted, "lose-mysel-in-the-joy-of-the-moment" type playing and exploring--I was already really traumatized and already probably clinically depressed . . . I learned to live my life in such a way that all I had to cling to about my future (which was REALLY, REALLY fuzzy) was that things would change drastically, once the surgeries were over . . . (living happily ever after, in other words. Not a really good strategy for success/happiness in real life, which requires way more than just survival mode!)
Not only did that "happily ever after" fantasy not turn out to be true, and did I get a really skewed view of what life really is like, I didn't get a chance to PLAY light-heartedly enough to really find out what I enjoyed, because I was so busy trying to figure out how to work through the trauma of the surgeries . . . (or, in high school, trying to figure out how to ignore that it was an issue, and keep overachieving, however anyone wanted me to . . . )
Later, in college, when I should've been heavily into career exploration mode, I was clinically depressed, and could barely get myself up off the couch to go to class. That had everything to do with leftover cleft issues (surgeries, teasing, feeling different, and especially, feeling that I had to DO something spectacular to make up for my "flaws"), and it's a wonder I ever graduated, as depressed as I was . . .
SO, here I am, more than 5 yrs later with the depression mostly resolved, having worked through the major parts of the cleft stuff (better late than never . . . although at the time, in college, I felt like I really didn't have any choice but to look at my past, I was so depressed . . . I actually WELCOMED body-memories and flashbacks from surgeries, because they were literally the only way I had, back then, of knowing for sure that my depression was in any way related to the years of surgeries . . . ) Anyway, years later, the work around careers and what I really like doing, and feel fulfilled doing and feel is my right-livelihood, is still there to be done. Again, better late than never . . . (And what will that "right livelihood" have to do with all the years I spent having surgeries and the years recovering from the emotional aftermath? Well, it can't help being connected, in some way, but it's more complicated than that, for me, I think . . . )
Anyway, what I mean is, the facial anomaly, for me, shouldn't be used as an excuse, but it definitely does play in there as a reason why I'm not more clear on what my goals are and how to achieve them. I really do feel like I'm making up for lost time, and the phrase "Late Bloomer" totally annoys me, but it seems to fit . . .
Hopefully the career issues will be something we can toss around in greater detail once the adult cleft/craniofacial list gets off the ground. There is a message board at http://www.widesmiles.org/ , but it is very "clunky" to use for what we really need it for, and there isn't any privacy (ie, all anybody needs to do is enter your name into a search engine, and they might come up with what you've written . . .Could be your boss, your ex-lover, etc etc etc . . . EEEK!)
I'll let you know when we finally do get the email list off the ground . . . I just keep hearing this tension, for us adults, between "not wanting to have ourselves a pity party, and not wanting to wallow in victimization," and-- feeling like we're somehow not quite being realistic about how the whole experience has affected our WHOLE lives . . . Not admitting that it does often have some long-term effects doesn't seem to me to be quite fair or realistic . . . (I don't hear you (or "read you" that is . . . ), ever, on this list, as being a whiner . . . . . Just so you know . . . :) Hope that made some sense . . . . Get well soon! Lark (who's helped to form a weekly Sunday afternoon "right livelihood" group that's working through Barbara Scher's _I Could Do Anything, If I Only Knew What It Was!_ ) ========================================================================= Date: Mon, 9 Mar 1998 22:33:52 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: softspot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen,
Andrew has two small softspots in the front from his frontal advancement. His surgeons told me that they will indeed close on their own. But they are so small that his doctors told me not to worry about it and if they have not closed by the time they fix his eyes (when he is 7 or 8) he will add a little bone to close them. It will probably take a long time to close up. How large are the soft spots? Andrew's are only about maybe the size of a pen.
As far as sitting up and all that jazz. Don't worry all things come in time. Andrew did not sit up independantly until he was about 7 months old. He has just started walking and he is 18 months old. Andrew didn't stand until he was 12 months old. Try working on his trunk strength by laying him on your lap and having him hold onto your fingers (or you hold his hands) and pulling him up a little but make him do it the rest of the way. But your PT should give you some ideas on how to increase trunk strength. Don't worry about what he is doing when because every child is different. I used to do that and I had to keep telling myself that Andrew is an individual and will do things when he is good and ready.
Good luck with everything.
Lynn Thornquist ========================================================================= Date: Mon, 9 Mar 1998 22:46:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Sensory Intergaration Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Michelle,
I am sorry, but I don't have any idea what Sensory Intergaration. I wish I could have helped you....hopefully you get the information you are looking for.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 10 Mar 1998 16:50:20 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: High Palate (was softspot) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Jenn - There has been no concern about Amy's high (Cathedral) palate either, but we don't have an ENT specialist attached to the CF clinic yet and in retrospect I don't recall our plastic surgeon or neurosurgeon looking inside Amy's mouth during clinic visits. Its presence was only mentioned when we had our visit to the ENT surgeon a couple of weeks back for Amy's glue ear, and of course with my usual lightening-fast thinking I develop during such appointments I didn't think to ask if he felt anything should be done about it.
It seems logical to me that repairing the high palate would improve speech and enjoyment of eating for our wee ones, and maybe even improve the nose issues - but I guess I will have to do some reading up on this one. And of course that raises the usual questions: a) is it enough of a problem to warrant another operation at this stage (or any stage), and b) how long is the waiting list anyway.
As I think someone else said recently - "If it ain't broke, don't try to fix it!"
Ann NZ ========================================================================= Date: Mon, 9 Mar 1998 20:11:37 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: High Palate (was softspot) In-Reply-To: <199803100350.QAA03888@chong.ihug.co.nz> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 04:50 PM 3/10/98 +1300, Ann wrote: >Jenn - There has been no concern about Amy's high (Cathedral) palate either,
Gee, that's a poetic way of putting it! Brings to mind pictures of Chartres, Notre Dame, etc etc . . . I wonder what mine would've been called? A "sky-light" palate? ;)
Lark (bilateral cleft lip/palate) ========================================================================= Date: Tue, 10 Mar 1998 16:06:34 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol Hamzsak <carolh@HOTKEY.NET.AU> Subject: Ankles MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello Everyone
I am concerned by Ashleigh still not walking yet and she will be 3 in May this year. She is just starting to want to be held by the arms and to be held up and walked but it really does wonders to the back.
I have noticed that we stand and hold her she seems to stand on the inner part of her feet and this makes her ankles look like their not in the correct position I'm just wondering if this is normal for their feet because of the way they are or maybe I should see someone about getting something put on her feet and ankles to help straiten them a little or do they get better when they walk.
I told my Physio and she didn't seem concerned and said that kids stand on the inside of their feet at first anyway but Ashleigh's look like they really bend inwards. Has anyone got any ideas??
Carol ========================================================================= Date: Tue, 10 Mar 1998 00:21:48 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Supplemental Security Income (SSI) Question for Pennsylvanians Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I was also told that a SSI rejection letter would be necessary when I applied for Evan's Access card in Pittsburgh. I didn't even have a copy of my own social security card and was bracing for a lovely trip to spend a day in line at the monroeville SS office. As I was trying to get the time and nerve up to deal with it, the Access card came in the mail!! Apparently, the application which i made at the Allegheny County Public Assistance office went to a medical committee with the copies of Evan's discharge summaries from Children's Hospital and that was enough to get approved for the card. It covered any copays and anything the insurance did not cover. As we had great coverage through Highmark Blue Cross, i only used it for copays, but that was really helpful. I wish California was as helpful!!
Marianne Camous San Carlos, CA...formerly from the 'Burgh ========================================================================= Date: Mon, 9 Mar 1998 21:21:02 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: What a week :-( Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>When I was younger I would frequently get food >caught up in the roof of my mouth and would require a q-tip to dislodge >it.
Joanne - I was wondering about this. It makes sense that food would get stuck up there. I will have to keep a watch for this in the future.
>This has been an incredible week. BTW, fever is gone. Now my heart >aches.
Joanne, yes you have had a tough week. I am sorry to hear the passing of your Grandma. sounds like she lived a long productive life. I am glad you are physically feeling better, but still take care of yourself as the emotional part needs time for healing too.
Thanks for the tip and info about the palate, Hugs, Robyn Johnston ========================================================================= Date: Mon, 9 Mar 1998 21:26:36 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Sensory Intergaration Mime-Version: 1.0 Content-Type: text/enriched; charset="us-ascii"
Michelle, sorry I dont know exactly what this is. Robyn Johnston
<bigger>>Sensory Integration</bigger> ========================================================================= Date: Tue, 10 Mar 1998 00:39:26 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: High Palate (was softspot) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-09 23:21:36 EST, you write:
<< Gee, that's a poetic way of putting it! Brings to mind pictures of Chartres, Notre Dame, etc etc . . . I wonder what mine would've been called? A "sky-light" palate? ;) >> Our craniofacial surgeon called Evan's palate (with a posterior cleft) a "Gothic Arch". Talk about Notre Dame..all I could visualize were those flying butresses!! ;) It was repaired in December and although they said it probably wouldn't make a big difference, It certainly had decreased the amount of food and drink going in his mouth and out his nose!! His ears have been marginally better (It IS ear infection season after all!!) and is supposed to improve speech. He babbles like crazy with the Passy Muir valve on but Speech therapy hasn't been restarted after our move...(rumor has it he will be approved for the county infant program ..YAHOO!! Shows what being a stubborn, obstinate, and otherwise obnoxious parent will get you!!)
Marianne in the Sunny (today at least ) San Francisco Bay Area!! El Nino takes a break!! ========================================================================= Date: Tue, 10 Mar 1998 00:45:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Ankles Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-10 00:06:07 EST, you write:
<< Has anyone got any ideas?? >> In our recent visit to the pediatric rehab doc he mentioned that we should keep Evan in shoes with a firm heel counter. That's the semicircular support on the back of the heel. The ones I had were Fisher price sneakers with velcro closures - (on sale at Target!) and he said that having them fit at Stride Rite was no big deal- just be sure there was a firm heel counter. Evan did a lot of the same things intil our therapist suggested a standing frame. It really helped his leg and torso strength. We didn't need it very long and they are mega expensive so be sure your insurance will cover one before going that route. It really seemed to do the trick where the baby walker and Johnny Jump UP had helped but he needed a bit more.
He's pulling up and cruising but not quite ready to venture out on his own yet- I'm trying to get him to walk holding on with just one hand now.
Marianne ========================================================================= Date: Mon, 9 Mar 1998 13:47:24 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: SSI DENIAL MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I have been through just about everything there is to go through with SSI. I won't get into those gory details. Remember that every state handles SSI differently, so what happened to me should not to you.
It is supposed to be less paper work if you are denied because of income by SSI. When they deny you, then you take the denial to your case worker and you shouldn't have to go through all of their questions about income. It should be quicker. Hope this helps.
Denise Graham ========================================================================= Date: Tue, 10 Mar 1998 23:55:09 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: High Palate (was softspot) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Lark they do say our children are God-given!
Ann NZ
At 08:11 PM 9/03/98 -0800, you wrote: >At 04:50 PM 3/10/98 +1300, Ann wrote: >>Jenn - There has been no concern about Amy's high (Cathedral) palate either, > >Gee, that's a poetic way of putting it! Brings to mind pictures of >Chartres, Notre Dame, etc etc . . . I wonder what mine would've been >called? A "sky-light" palate? ;) > >Lark >(bilateral cleft lip/palate) > > ========================================================================= Date: Tue, 10 Mar 1998 23:55:11 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Ankles Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Carol the immediate questions that come to my mind are:
1 What do Ashleigh's feet and ankles look like?
2 Has an orthopaedic surgeon assessed her feet and ankles?
3 Have her feet been x-rayed so you know what the bone structure is like?
You probably need that information before the physio can really make an informed comment.
Amy's feet were "flattened" at 1 yr so we have no experience with unsculptured feet.
All the best Ann NZ
>I have noticed that we stand and hold her she seems to stand on the >inner part of her feet and this makes her ankles look like their not in >the correct position I'm just wondering if this is normal for their feet >because of the way they are or maybe I should see someone about getting >something put on her feet and ankles to help straiten them a little or >do they get better when they walk. > >I told my Physio and she didn't seem concerned and said that kids stand >on the inside of their feet at first anyway but Ashleigh's look like >they really bend inwards. Has anyone got any ideas?? > >Carol > > ========================================================================= Date: Tue, 10 Mar 1998 07:05:24 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Sensory Intergaration Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Michele,
No experience w/ this one..yet!!
Jenn ========================================================================= Date: Tue, 10 Mar 1998 07:10:04 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: Ankles
Hello!
I am struggling for a come back to Ann's "Cathedral Palet" comment, but cannot find one.
Carol, I would look into another opinion if I were you. I walked late, can't exactly remember how old, but my parents thought the delay was due to my ankles being formed incorrectly. I wore a brace that connected both feet and pulled the toes in. Wish I could draw you a picture. Anyway. I also remember a problem I had with a certain pair of shoes. It was as if I had my shoes on the wrong feet, but didn't! Just a thought. Hope Ashleigh is doing well.
Thanks to you all for your support. Please understand if I am "away" for a few days. My dad is taking Grandma's death rather hard and I will need to be with him.
Talk with you soon. Joanne, snow covered ground, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Tue, 10 Mar 1998 07:43:19 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Ankles MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Carol,
It seem to me Kayla didn't stand on her feet right either. They are flat on the bottom and very high on the top. We had plastic things (I'm not sure what they call them) made, they went almost up to her knees on both feet. I was in the military so I'm not sure of the cost, but I believe the shrines can make them too, but again I could be wrong. Kayla walked around 18mos and I think these things really helped. She doesn't wear them anymore. They did make her feet sweat, and in the summer it was really bad, but we did what we had to. Kayla still has flat feet and high on the top. She has very limited motion of her ankles, but she can run and play. Her feet turn out and my mother is always concerned but the doc do seem to be to concerned. One doc said it was b/c the bones between the knee and the ankle is not growing straight. I'm not real worried about it right now. Hope this gives you some insight.
Good Luck.
Michele ========================================================================= Date: Tue, 10 Mar 1998 07:52:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Cleft palate MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0026_01BD4BF9.8AC750E0"
This is a multi-part message in MIME format.
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Kayla doesn't have a cleft palate but it is very high also. I thought = by making rounder and bringing it down would help, but not yet I guess. = =20
Last week we saw her ENT and he said after Kayla had her mid-face = advancement that it would most likely be worst. After surgery of the = mid-face they would go in and do this and that, and I don't recall all = the name of the stuff he would do. But he did say that some muscle in = the back of her mouth wasn't right and that is why when she talks it = sound like she has her nose plugged. He had her say "funny, bunny". He = told us to fix this he would pull some muscle up from the back of the = throat and do some repair. I don't know what he was really taking = about, he used all these medical terms and we aren't near that stage of = the game so I didn't worry about. They only reason I am bringing it up = know it b/c there is so much decision on cleft palates. =20
So this is our experience so far.
Michele
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV>Kayla doesn't have a cleft palate but it is very high also. I = thought=20 by making rounder and bringing it down would help, but not yet I=20 guess. </DIV> <DIV> </DIV> <DIV>Last week we saw her ENT and he said after Kayla had her mid-face=20 advancement that it would most likely be worst. After surgery of = the=20 mid-face they would go in and do this and that, and I don't recall = all the=20 name of the stuff he would do. But he did say that some muscle in = the back=20 of her mouth wasn't right and that is why when she talks it sound like = she has=20 her nose plugged. He had her say "funny, bunny". = He told=20 us to fix this he would pull some muscle up from the back of the throat = and do=20 some repair. I don't know what he was really taking about, = he used=20 all these medical terms and we aren't near that stage of the game so I = didn't=20 worry about. They only reason I am bringing it up know it b/c = there is so=20 much decision on cleft palates. </DIV> <DIV> </DIV> <DIV>So this is our experience so far.</DIV> <DIV> </DIV> <DIV>Michele</DIV> <DIV> </DIV> <DIV> </DIV> <DIV> </DIV></BODY></HTML>
------=_NextPart_000_0026_01BD4BF9.8AC750E0-- ========================================================================= Date: Tue, 10 Mar 1998 08:43:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Intro MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
From Anne Zaengle, North Wales, PA - mother of 5 year old Quentin Zaengle. She's become very computer literate this week!!!! I (Dad) have been reading and passing on info almost daily to Anne.
I have been meaning to write to you about our son Quentin who has Apert Syndrome, but haven't had the time to sit down and actually do it. Quentin is 5 years old now. Every day, every year, every surgery is a learning experience for us. Quentin is now in a preschool for typical kids and will be entering kindergarten this Sept. And it sure has been a learning experience with him in a typical pre-school - it has opened our eyes for what is about come.
Quentin was born 3/1/93 and weighed in at 9 1/2 lbs. I started labor on a Sat. afternoon and didn't have Quentin until Mon. night. He was born C-section because my labor failed to progress. Luckily the doctor that took over during my labor specialized in Genetics and was able to name Quentin's syndrome right away. It was a tense moment, one we'll never forget (and I was told from the doctor and delivery staff from having my other children, it's a night they haven't forgotten either). I got to see Quentin for a split second before I was wheeled into the recovery room while Joe spent time with him in the NICU while waiting for the ambulance to take Quentin to Childrens Hosp. of Phila. (CHOP). I spent a week in the hospital recovering from my surgery while Joe and my Dad were my link to Quentin.
Quentin spent 2 weeks in CHOP while doctors from the Cranio-Facial team evaluated him. We were so glad when he finally came home and we could start our new life with our new little boy. And that is exactly what we did...until reality hit us when Quentin was 5 months old - we had to deal with his first surgery, a mid-face advancement and forehead reconstruction. After that he had 3 hand surgeries then another major surgery at 19 months old - a spinal fusion after which he spent 9 months in a body cast. During that 9 months he had an eye muscle surgery and then he had the tubes put in his ears (which was the easiest of all the surgeries - we took Quentin out for breakfast afterward, he was absolutely fine). That was his last surgery and he hasn't had one since (he was 3 years old). So medically we've been lucky (or should I say Quentin has been lucky). He has his annual Cranio-facial evaluation every fall and we've always walked out of there with good news - no surgeries this year, see you next evaluation. This past fall we were worried the doctors were going to recommend another mid-face advancement but his head is growing fine and there's no pressure on the brain. We'll see what next year brings. We don't think about these things until they come up but we sure aren't looking forward to a next surgery since he's older now and aware of what's going on compared to when he was a baby.
Quentin was in early intervention at 9 months which was good for him socially. It was also good for me as in regards to support (even though there were no mothers of Apert children there but just being with mothers of special needs was a help for me). After that at age 3, Joe and I decided to give Quentin the opportunity of attending pre-school with typical kids to see how he would do. That is where our lesson of education began. He's been at that school for 1 1/2 years now and has had a number of problems - we had a behavior specialist involved and got a wrap-around aide the first year. His attention isn't good and he's a real master at avoidance strategies. The beginning of the second year (this past Sept.) started out well until after the holidays when the school called us again and asked us to call the behavior specialist and asked for wrap-around help again. The behavior specialist said Quentin doesn't need wrap-around but instead the teacher just needs work with him using behavior modification techniques. After still complaining about Quentin, the school finally admitted to me that they aren't doing their part. So in essence, they don't want to take the time to help Quentin. We are now getting ready for Kindergarten and are hoping to get him into a regular class with an aid. The school district wants us to tour the special education classes and we will but we prefer that he learns and imitates from typical kids.
Well that's that's the story of our Quentin and I thoroughly enjoy reading all your letters. Thank you to Teeter's parents for continuing this wonderful means of support. I don't feel so alone now.
Anne Zaengle ========================================================================= Date: Tue, 10 Mar 1998 08:45:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: teething Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I was jsut curious if anyone's children, or if anyone themselves, actually got their teeth at the "correct" time. I have heard and read so much about Apert kids getting teeth late I find it hard to believe that Jordan is getting his already. However, this is what everyone keeps telling me is occuring. Just curious..Thanks in advance
Jenn(in a really chilly Tampa/St. Pete... 48 degrees..ok..cold for south Florida) ========================================================================= Date: Tue, 10 Mar 1998 08:22:59 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Sensory Intergaration
Michele
I remember reading a magazine article (don't remember where, maybe my wife knows) a couple years ago or so. It sounded like some of the ideas fit Krista pretty well. I also remember we talked to her therapists about it a little. But we've never done much about it. Can't remember why. I'll have to ask Mary and get back to you if she remembers anything.
What I DO remember is that it was described as a way to draw kids with ADD, autism, etc. out of their shells a little and help focus their minds instead of letting them wander (Krista has that "ability").
More later if I can find anything.
Bob Horning ========================================================================= Date: Tue, 10 Mar 1998 09:10:09 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Re: ankles MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
When Nick was maybe 6 months old. He also had the shoes that he wore at night that helped to turn his feet in with the bar between the feet. This helped to some degree but his feet still do turn out some. I was also told by his orthopedic dr. that the hips are also to blame for part of this problem because of socket problems where the leg meets the hip. In case someone is having problems with shoes: I had a heck of a time with Nick when he was younger. His shoes always hurt his feet. I would go to stride rite and get good shoes and when I went to put them on him he would just cry. I finally figured this problem out on my own. Because his toes were shorter than average, for instance his foot might measure a 10 but the shoe would not fit right because of the toe allowance therefore I would get him a size and a half larger. there would be extra toe room but the shoe would fit the rest of the foot and not hurt or cause problems. Judy ========================================================================= Date: Tue, 10 Mar 1998 10:42:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Intro Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome to the Zaengle family. My name is Janine and my daughter Emily is 7 and a half months old with Apert. We also have a 3 and a half year old son Nicholas. We live in NY, Long Island area. I know how you feel about being connected through this list. It's a wonderful place.
Sounds like Quentin is doing well now. I am sure the school issue is a trying one. Something we will be up against down the road. I don't think that far in advance.
To Joanne, sorry to hear about the loss of your grandmother. No matter how old someone is, when it's somebody you love, the loss is never easy.
Jenn, I don't know what is the "normal" time for kids to get teeth, Apert or not. My son Nicholas didn't get his first tooth until he was 13 months old. He started walking and got a tooth the same week. I think that Emily is ready to get one because she is teething so badly. Just because they are teething doesn't mean the tooth is ready to pop out yet. They say that teeth is hereditary. If you and Joe got them early then Jordan probably will and if you got them late, then he probably will.
Hope everyone is doing well.
Best wishes,
Janine ========================================================================= Date: Tue, 10 Mar 1998 09:58:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TIM <timg@BELLSOUTH.NET> Organization: Home Subject: schools MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Anne,
Our son Nicholas is 6 and started kindergarten at 5 last fall, he is in a regular class, but is pulled out 2 hours per day for therapies and special ed. This has not worked well at all for him, the transitions are not easy for him and most of the time is spent trying to get him to calm down and get back into the lesson. We had a meeting with both of his teachers, the school physcomatrist(spl), the school counselor, his therapists, principal and others... His regualr classroom teacher thought Nicholas would do better to just stay in her class all day and let them come there for the therapy and stop the special ed classes and get him an aide to just stay with him in her class. I agreed, but we were the only two. As a matter of fact, after the meeting, his teacher was repremanded for even suggesting an aide. The county schools say they cannot afford to pay for an aide. We also took Nicholas to a child psychiatrist for a behavioral evalutation, and he agrees with us, but nothing has happened yet. We bought a new house and moved last month, so, next fall, Nicholas will be in a different school district. I am hoping it will be better. We have decided to let him finish out the year where he is and the school board agreed to that. So, you are not alone... it seems that we will have to be ready to fight for what is best for our kids. Carol Graves ========================================================================= Date: Tue, 10 Mar 1998 10:01:30 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TIM <timg@BELLSOUTH.NET> Organization: Home Subject: feet...shoes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Judy, We too figured that out and buy Nicholas' shoes about a size larger.. has worked great and he rarely complains about shoes hurting anymore. Carol Graves ========================================================================= Date: Tue, 10 Mar 1998 10:58:47 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: teething MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Jenn, Daryl got his teeth at the age appropriate time. He is barely two and has 16 teeth!! Watch out for those chompers. Daryl didn't seem to have any trouble teething. We never had any screaming spells or fevers for days except when something else was going on with him. Hope this helps.
Denise Graham ========================================================================= Date: Tue, 10 Mar 1998 13:06:44 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TIM <timg@BELLSOUTH.NET> Organization: Home Subject: teething MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicholas got his teeth later than normal, and had a very hard time. His gums would bruise and turn black and blue right before the teeth finally came in.. Carol Graves ========================================================================= Date: Tue, 10 Mar 1998 16:14:26 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: Sensory Integration MIME-Version: 1.0 Content-Transfer-Encoding: 7bit Content-Type: text/plain; charset=us-ascii
Dear Michelle, I have the perfect person for you to talk to. Her name is Kathy , she is 32 years old, has Apert Syndrome, AND is a pediatric occupational therapist with a specialty in sensory integration. I am sure that she would answer any questions you might have. If you e-mail me your phone number, I will have her call you ASAP. She is a good friend and is a wonderful person to talk to, not to mention just a wonderful person! Amy Irvin (76121.202@compuserve.com) ========================================================================= Date: Tue, 10 Mar 1998 17:16:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: soft spot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Okay, paranoid mom that I am, I have a question. I sorta talked about it already..
The right side of Jordans new arc shaped soft spot is sorta bulging..not bad mind you, but its there..sorta like the shape of a golf ball..only it doesn't stick out that much. We didi go to the Dr. The only one available was the plastic guy. I wanted to see the neurosurgeon, but he was in surgery. The plastic guy said it was nothing..I was actually looking at his dura poking out and that it may occur on both sides eventually. I am rather uncomfortable about this, and don't want to go panicking to the neurosurgeon if it truely is nothing. I just don't recall ever being taught that the dura bulging out a little is normal..and I have consulted every text we have around here. Any advice/experience would be helpful . Pretty soon the office staff is going to start making fun of me, if they don't already, or think I have munchausen by proxy I just don't want to let a problem continue by being afraid of what the doctors think. I'm just in unfamiliar territory, and if truely isn't a problem..then ok too..great in fact!!
Thanks in advance Jenn ========================================================================= Date: Tue, 10 Mar 1998 19:45:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: Re: APERT Digest - 9 Mar 1998 to 10 Mar 1998 - Unfinished Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carol, My daughter ,Mallory, is very flat footed. She also has an extra bone in her feet which has caused a large callus on the bottom of her feet. It is very hard to get shoes to fit. She did walk on time but her feet have always hurt her. We have an appt. with a local orthopedic surgeon this week. Another idea we tried was called orthotics. They make a mold of her foot and then make an insole to help relieve the pressure. Maybe this will help.
Diane ========================================================================= Date: Tue, 10 Mar 1998 17:44:44 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: soft spot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Jenn: Hi, Pat here, lurking. Did the plastics guy say why it wasn't a big deal? It's one thing to get told not to worry, and another to be explained WHY not to worry. Information is what you need and instead you got what?... a pat on the head so to speak... Like you I have all sorts of material that I consult regularly with questions. I'd say if you can't find it, go to the neurosurgeon and ask about it, and keep the dialogue going until you figure you're clear on the explanation. Doesn't hurt to be informed.
you also wrote: or think I have munchausen by proxy
Gee, now there's a term that gives one pause.
Well, the office staff will just have to get used to it. You ARE the consumer, after all, and more importantly, Jordan is YOUR baby. No one else has his best interests more at heart than you do.
Just a few coins for the jar Pat (mom to the Peach) Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 10 Mar 1998 20:33:10 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: soft spot MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Dear Jenn,
After Kayla 6 yrs old had surgery last summer she developed a mass on the top of her head two different times in two different locations. They did a CT to make sure there was nothing going on, and never did figure out what was causing it but it was blood build up under the skin. Kayla head absorb the blood. I would be a little nervous if I were you too.
Good Luck,
Michele ========================================================================= Date: Tue, 10 Mar 1998 20:57:23 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Welcome MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0042_01BD4C67.2006C920"
This is a multi-part message in MIME format.
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Dear Joe and Anne,
Welcome to the listserv. My name is Michele and I have a daughter who = will be 7 on Easter this year. We are also from PA. We live in Warren, = and that is in the North west corner of the state.=20
Where is North Wales?
Michele
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Joe and Anne,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Welcome to the listserv. My name is Michele = and I have a=20 daughter who will be 7 on Easter this year. We are also from = PA. We=20 live in Warren, and that is in the North west corner of the state. = </FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Where is North Wales?</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Michele</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0042_01BD4C67.2006C920-- ========================================================================= Date: Tue, 10 Mar 1998 21:52:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: Supplemental Security Income (SSI)/Massachusetts Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Is there anyone from Massachusetts who gets SSI?? We applied when Tim was a baby and were refused because of income. Tim is 16 years old now and I am sure he'll be eligible for SSI when he turns 18. However, we sure could have used extra health insurance along the way. That was not something we were able to get because we weren't eligible for SSI. Any other experiences from Massachusetts??
Beth Tolson ========================================================================= Date: Tue, 10 Mar 1998 22:06:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Re: softspot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Karen: > >I know that Emily (7 and a half months) has two soft spots also, one on each >side. I also get concerned. The one on her left side is really soft. The >drs. say the same thing. It will close. They do, however, have to keep >monitoring her skull with x-rays and 3-d scans to check on it. > >I also remember reading somone saying they had to have a repeat cranial >surgery because the soft spot didn't close. I don't know how old their child >was. > >As to the palate, can't help with that as Emily has a cleft palate that will >be repaired approx. May or June. > >Hope this helps somewhat. > >Take care, > > >Janine > >
Janine,
I was crazy all night trying to remember where I read about the child who was to have a repeat surgery because of the softspot on the side and finally it hit me . The story was on Teeters Page. It was Jake Bailey. Now I feel better knowing where it came from.
Karen ========================================================================= Date: Tue, 10 Mar 1998 22:01:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: What a week :-( Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>>When I was younger I would frequently get food >>caught up in the roof of my mouth and would require a q-tip to dislodge >>it. > >Joanne - I was wondering about this. It makes sense that food would get >stuck up there. I will have to keep a watch for this in the future. >
One thing we found with Nicole is that she could store food up in her palate like a little squirrel. Pork, steak and things like that would find there way up into her palate, and well after we were done eating she'd be munching away on something. Once, she was out with me in the garden pulling weeds, came in the house and ate lunch (peanut butter sandwich) and somehow managed to keep a wood chip up in her mouth the whole while. After lunch when we went to put her down for a nap, she nonchalantly spit out this big ole wood chip. Quite the trick if she were a magician.
Frank Contrino ========================================================================= Date: Tue, 10 Mar 1998 22:08:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> >Speaking of..any teething advice out there??? It seem my little 6 month old >(can you believe hes already 6 mos????) has decided he wants to be a big boy >and munch on dads Oreos..and the only way he can do that is if he has teeth!! >HELP!!!!! He doesn't take well to the nusiance.....handled having his head >split open much better!!! >
I think you should teach him the time honored technique of "dunking". A large glass of cold milk can make an Oreo quite edible without teeth. It may require a bit of patience to let it soak long enough, but it'll get pretty mushy after a while. Or, you could simply twist them apart and let him partake in the cream filling. You simply can't deny anyone the pleasure of an Oreo (I believe it's a criminal offense).
Frank Contrino ========================================================================= Date: Tue, 10 Mar 1998 22:42:44 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: softspot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Laura,
Hope you were not upset by my writting about Jakes story on Teeters Page. I just wanted to let janie know about where I read about the softspot . Maybe you can shed some light on what you may have found out from Jakes doctor . It is a big concern of mine and whould be grateful for anything you tell me about it.
As for the high palate question I called the doctor today and asked why exactley it does not need to be worked on anytime soon and he told me that it will be worked on when his mid face is done. He said that right now since Billy does most of his breathing by mouth it is to his advantage to have that extra space because his tongue go back when he sleeps and kind of blocks some of his airway. This makes sense but I wish he had told us this before.
I wanted to share a bad experence that we had lastnight. I think some of you will understand unfortunatley. During a trip to a local stoe last night with My husband and I and our threee year old Kaila and our ten year old Lacey, when we were going to the check out a little girl who looked to be about 7 or 8 turned to her mother and said Mommy look at how ugly that baby is. Well, I felt my heart drop right out of my chest. The mother of the child said nothing and so the child repeated it again. This was the first time this had happened . People have looked and stared but this was completly different. After we left the store I thought of a number of things we could have said but it was to late. My daughter Lacey was very upset by the whole thing. I asked her how she felt about it and she said yes but that her brother was a cute baby but that the mother of that little girl was a ugly person for letting her daughter be so mean.I was very proud of her. I guess this is the beginning of what is to come but as they say the first cut is the deepest.
Hope all is well with everyone and I wanted to say welcome to the new people and how sorry to hear about Joanns Grandmom.
Karen ========================================================================= Date: Tue, 10 Mar 1998 19:49:52 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: soft spot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Jenn, If it were me, I would try to get a hold of the Neurosurgeon. I would not be comfortable with the dura protruding either. Never hurts to double check.
Good luck, hugs, Robyn J.
>We didi go to the Dr. The only one available was the >plastic guy. I wanted to see the neurosurgeon, but he was in surgery. The >plastic guy said it was nothing..I was actually looking at his dura poking out >and that it may occur on both sides eventually. I am rather uncomfortable >about this, and don't want to go panicking to the neurosurgeon if it truely is >nothing. I just don't recall ever being taught that the dura bulging out a >little is normal.. ========================================================================= Date: Tue, 10 Mar 1998 23:42:53 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: softspot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen,
I have had a similar experience, but the mother was actually quite smart about the situation. I was in blockbuster when Andrew was only about 7 months old and had only had one hand surgery at this time. A little boy said to his mother, what is wrong with that baby's hands. His mother politely said, that little boy was probably born that way, and he may look a little different, but being different is not a bad thing. Everyone is different in their own way. I was shocked as to the way she handled it. That gave me the confidence to turn around and say, actually Andrew was born with all his fingers looking like a mitten and he is having surgeries to give him fingers just like yours. The boy smiled and I thanked his mom. I don't think she knew what I meant by the thank you, but I'm sure all of you do.
But I have had worse things come out of adults mouths before. Obviously, they were very ignorant people. A girl I used to work with (a friend) used to make jokes all the time saying things like "is there anything on Andrew that isn't webbed"? She said that beauty after I told her that Andrew's vocal cords were webbed. She says things like, "well at least he will be a good swimmer". That one I hate because my husband got the same thing when he was growing up. I know she says these things because she doesn't really know what to say to me or how to handle it, but in that case she should just keep her mouth shut!!!!!!! Another woman I worked with said to me once, "what is Andrew's life expectancy"? I was ready to punch her one. I also wanted to say, the same amount of time as your ugly kids. But I didn't. People just don't understand how much it hurts for them to say these types of things. Our children are just like everyone else, they just do things differently. Another classic is, "Oh my goodness, what happened to him, was he in an accident?" That line is normally said by elderly people.
Well that is my experience and my two cents. I wish the whole world would just get a clue!!!!!
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 10 Mar 1998 22:59:42 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Billy - comment Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Karen, Bless you heart - I feel for you on this one. We have been there too. It hurts every time these comments are made. Fortunately, we get more positive comments, than negative ones. Unfortunately the negative ones sting the worst.
>My daughter Lacey was very upset by the whole >thing. I asked her how she felt about it and she said yes but that her >brother was a cute baby but that the mother of that little girl was a ugly >person for letting her daughter be so mean.I was very proud of her.
Your daughter Lacy is pretty sharp. It is true that what our makeup is on the outside is no reflection of what kind of people we are as a whole. This is something that the little girls mother has unfortunately never taught her daughter. Something that your daughter knows, which is a reflection of your values.
A little side note here that is somewhat related...
I went to a lecture through our early intervention playgroup on Monday. It is for parents of children with all kinds of special needs. The topic was Self Esteem and raising our children with special needs. Situations like this will happen sometimes, unfortunately we cannot stop every thoughtless person from speaking. We just have to learn how to best handle each situation as it happens. And sometimes, maybe the best thing is to just walk away.
One issue that was brought up was that in our generation, (mid 20's & up), people who had differences of any sort, were usually segregated from the general population. Therefore, the general population was never taught how to deal with anyone who may have differences. They may not know how to - or feel comfortable themselves because they have never been in this situation before. Looking back, I can attest it was true for me. I do not remember anyone with any type of a difference in my classrooms. They usually had their own classroom. Whereas now, for lack of a better word, "mainstreaming" is accepted. I don't think I was ever exposed to someone my own age with any type of difference until I got to college.
This lecture kind of shed a "new light" for me in understanding how to deal with people who may not know how to react in certain situations - like what happened to you at the store. A lot of people of our generation just have never been exposed to anyone who may have a difference and have no skills in this area. Therefore, they might not know how to educate their children either when situations arise. Granted, IMHO, this is not an excuse, and behavior like this child displayed, seems really rude in general. A decent parent with any morals at all should correct it immediately and have their child apologise. But for many others out there, it could be they just lack the experience. Anyways, I now try to educate others as much as I possibly can if the situation warrants. It is hard, because I don't want to give too much information either if it in not wanted. Each situation is different. If the person is truely malicious, I feel it is better to just go about your own business, and assume they have a major problem.
I know this topic comes up regularly. Jenn had a great point last week, when she stated, what actually is the definition of birth defect anyways, a person with a difference in physical appearance, or someone like Jeffrey Dahlmer?
I also have 2 older posts that I have kept, that I refer to often, and share with other people when this issue comes up. I will send them to you directly as they are quite long and they are old posts from this list.
Good luck and give Billy a big hug and kiss, Robyn Johnston
At 10:42 PM 3/10/98 -0500, you wrote: >Laura, > >Hope you were not upset by my writting about Jakes story on Teeters Page. I >just wanted to let janie know about where I read about the softspot . Maybe >you can shed some light on what you may have found out from Jakes doctor . >It is a big concern of mine and whould be grateful for anything you tell me >about it. > > > > >As for the high palate question I called the doctor today and asked why >exactley it does not need to be worked on anytime soon and he told me that >it will be worked on when his mid face is done. He said that right now since >Billy does most of his breathing by mouth it is to his advantage to have >that extra space because his tongue go back when he sleeps and kind of >blocks some of his airway. This makes sense but I wish he had told us this >before. > > > >I wanted to share a bad experence that we had lastnight. I think some of you >will understand unfortunatley. During a trip to a local stoe last night >with My husband and I and our threee year old Kaila and our ten year old >Lacey, when we were going to the check out a little girl who looked to be >about 7 or 8 turned to her mother and said Mommy look at how ugly that baby is. >Well, I felt my heart drop right out of my chest. The mother of the child >said nothing and so the child repeated it again. This was the first time >this had happened . People have looked and stared but this was completly >different. After we left the store I thought of a number of things we could >have said but it was to late. >I guess this is the beginning of what is to come but as they say the first >cut is the deepest. > >Hope all is well with everyone and I wanted to say welcome to the new people >and how sorry to hear about Joanns Grandmom. > >Karen > ========================================================================= Date: Wed, 11 Mar 1998 07:00:12 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Stupid remarks
>Well that is my experience and my two cents. I wish the whole world would >just get a clue!!!!!
>Lynn Thornquist >(Holliston, MA)
Forgive me, but I always get a chuckle when you all tell stories about the stupid things (I mean really stupid) people do and say. They all sound so familiar, and the people on the giving end don't have a clue, as Lynn said. I'm glad to see Mary and I are not the only ones who sit around and think of snappy answers we wish we had said. If only we got a dollar for each stupid remark...(then we wouldn't need to discuss insurance or SSI).
Bob Horning
P.S. Here's another one for the books. A friend of ours was about to bring her son in for surgery on his brain (for something else, not Aperts). Somebody said to her, "I know how you feel. My kid had ear tubes put in last year."
Duh. ========================================================================= Date: Wed, 11 Mar 1998 09:03:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: teasing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I don't know if its good or bad, but I usually blurt out a short rendition of JOrdan medical history before anyone an stare too long, or ask questions. They probablly all walk away thinking, "Woa..too much information..all I wanted to know was if it was a boy or girl"
For us here in Florida, not one ugly thing has ever been said about Jordan by adult or child. I am thinking it is because so many children come to Tampa from South America, Mexico, and the Isalnd to have surgeries done and its publicized sooooooo much. even I am tired of hearing about this one little girl who had surgery, went home, came back..and is now being D/C from the hospital. But I think it has upped the awareness of differences, I mean they have news updates during Sienfeld of surgical procedures on these kids. I am talking MAJOR AWARENESS!!! hopefully, it will be to our advantage, but oneday we will move, and one day someone will say somethng..hopefully I won't still be in my tent of security.
Oh, re: soft spots..I am calling the neurosurgeon today, for extra credit in the soft spots of Apert kids..postop..should be worth at least one test grade dontcha think??
Thank you all so much for giving me the courage and conviction to know I am correct and that it is not only my right, but my DUTY to find out about this.
Jenn ========================================================================= Date: Wed, 11 Mar 1998 09:08:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Stupid remarks Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I love it..tubes vs neurosurgery...Its almost like you want to give these people a textbook, or have them looka at a cranial post-op picture!! Yeah..I am sure a post-op tonsilectomy would look just the same!!! Go figure???
Jenn ========================================================================= Date: Wed, 11 Mar 1998 08:13:23 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: stupid remarks MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Good one Bob!!!Ha...Ha...
We all need to adopt the saying: GET A CLUE!
Denise Graham ========================================================================= Date: Tue, 10 Mar 1998 22:54:56 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: bad experience MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Karen, I just read about your rotten trip to the store. Had that been me I just do not know what I would have done.I do know that if the mother did hear the little girl, I certainly hope that the little girl got a real quick education from her mother arter she got home on treating people as you want to be treated. And she should have been made to apologize right there on the spot. The only time I had someone just out and out rude that I can recall was when Nick was just a baby. I was in Walmart and encountered a young woman. Probably 18 or so. As we were approaching her, she looked at Nick and got his God awful look on her face. By the look on her face, one would think she was going to step in a cow pie barefoot. Anyway, I looked her square in the eye and asked her "Do you have a problem?" Her reply was "Do you?" I hope she ran out of gas and got a flat tire on her way home. She definitely was old enough to not be so rude. While I at the keyboard though, I thought I would share a nice story with all of you. On Feb. 14, 1992, {my son Nick had just had a surgery a week or so before} I went to the mailbox and there was a letter addressed to Nick. No return address. I opened it up and inside I found a paper folded and on the outside of the paper was written "jesus loves you" By this time I getting real curious about this "letter" I unfolded the letter and just about had a coronary. Inside this paper was three crisp brand new one hundred dollar bills. To this very day, I have not one clue as to where this came from and probably never will since six years have past. Hopefully you have recovered from that little girl"s sting. The fact is you know that you have a great kid and we all know it too. Judy ========================================================================= Date: Wed, 11 Mar 1998 09:34:15 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Stupid remarks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>P.S. Here's another one for the books. A friend of ours was about to bring her son in for surgery on his brain (for something else, not Aperts). Somebody said to her, "I know how you feel. My kid had ear tubes put in last year." > >Duh.
Good one Bob! I love it!!! :-) Definately clueless!!! Robyn J. :-)
> ========================================================================= Date: Wed, 11 Mar 1998 14:02:44 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Kathi Noble <noblek@EAGLE.LKGEORGE.ORG> Subject: Re: Sensory Intergaration In-Reply-To: <005001bd4bcc$8f959b40$411916d0@default> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> Hello everyone: A week or so ago I posted a message in reference >to Sensory Integration. I only received one reply and that was the >person didn't know what it was. I am wondering if any one has dealt with >this before, the yes's and no's can both reply, I am looking for any >type of feed back. Thanks in Advance. Michele
HI. I know some things about Sensory Intergration. I have a student who has been identified as being sensory defensive. He receives therapy once a week to help him tolerate tactile stimulus. The therapy consists of brushing, joint compressions, and muscle work. I do see a difference in his ability to tolerate touch and closeness of others. There is a web site that may give you more information. The student I have does not have Apert. Good luck! Kathi Noble, Special Education Teacher Lake George, N.Y. http://www.nmark.com/si/ ========================================================================= Date: Wed, 11 Mar 1998 11:25:50 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Stupid remarks (or not so stupid, depending on POV . . ) In-Reply-To: <022E235068ADC030*/c=US/admd=MCI/prmd=Honeywell/o=MN-MTA/ou =MSMac/ou=CORP/s=Horning/g=Bob/@MHS> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 07:00 AM 3/11/98 -0600, you wrote: >Forgive me, but I always get a chuckle when you all tell stories about the stupid things (I mean really stupid) people do and say.
OK, here's my contribution . . . I have a friend who's missing most of his lower jaw and face because back in the "Dark Ages," radiation treatments were what they used to treat cavernous hemangioma . . . He does a comedy act about his facial difference and his experiences with discrimination called "The Church of 80% Sincerity" (the main idea of which is that it seems to work out that we need only be 80% sincere about whatever positive thing or attitude or new change that we undertake--apparently Grace will step in and take care of the rest, oddly enough . . . )
Anyway, he likes to tell the story of the woman who came up to him after one of his early performances and said, "I felt that I identified with you so much--because I had acne as a teenager. I knew exactly what you meant, and just how you felt about looking different!"
David said that when he first heard what she'd said, his jaw dropped (or rather, it would've, if he'd *had* one to drop . . . ), but then he realized that for her, the connection with his experiences really was deep and genuine, which was what he'd been aiming at with his act to begin with . . . people reclaiming shamed parts of themselves that they'd disowned, that sort of thing . . . It's only a matter of degrees, I guess, when you're talking about differences . . . But it did seem to be an interesting thing to say at the time .. . . ;~)
BTW, if anybody's ever looking for an inspiring, funny speaker for any event, disability/difference-related or not, David Roache is your guy! But hurry--I think it's probably only a matter of time before he hits the bigtime . . . He's auditioning in front of screenwriters, etc this month! :)Lark ========================================================================= Date: Wed, 11 Mar 1998 16:29:31 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Kathi Noble <noblek@EAGLE.LKGEORGE.ORG> Subject: Fantasy Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi. I am a Special Education teacher with an Apert 8 year old boy. I'm finding that he spends a lot of time in a fantasy world. It is difficult to get him to attend during instructional lessons, especially when there are several students in the group. He will focus when the activity is something that he wants to do, such as a cut and paste project. Has anyone experienced the same things? Does medication and/or vitamin therapy work? I'd appreciated any suggestions.
Thanks, Kathi ========================================================================= Date: Wed, 11 Mar 1998 15:42:10 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Fantasy MIME-Version: 1.0 Content-Type: text/plain
Wow, he sounds like me.... just a thought, but is this unusual for a "normal" 8 year old boy?......... --->Don
> -----Original Message----- > From: Kathi Noble [SMTP:noblek@EAGLE.LKGEORGE.ORG] > Sent: Wednesday, March 11, 1998 4:30 PM > To: APERT@LISTSERV.AOL.COM > Subject: Fantasy > > Hi. I am a Special Education teacher with an Apert 8 year old boy. I'm > finding that he spends a lot of time in a fantasy world. It is > difficult to > get him to attend during instructional lessons, especially when there > are > several students in the group. He will focus when the activity is > something > that he wants to do, such as a cut and paste project. Has anyone > experienced the same things? Does medication and/or vitamin therapy > work? > I'd appreciated any suggestions. > > Thanks, Kathi ========================================================================= Date: Wed, 11 Mar 1998 14:52:29 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Fantasy
>From: Kathi Noble on Thu, Mar 12, 1998 2:39 AM >Subject: Fantasy
>Hi. I am a Special Education teacher with an Apert 8 year old boy. I'm >finding that he spends a lot of time in a fantasy world. It is difficult to >get him to attend during instructional lessons, especially when there are >several students in the group. He will focus when the activity is something >that he wants to do, such as a cut and paste project. Has anyone >experienced the same things? Does medication and/or vitamin therapy work? >I'd appreciated any suggestions.
>Thanks, Kathi
Kathi
Our daughter Krista (10) is like that. We've run across a few others on this list server that also have these characteristics. Right now I don't have time to write much, but if you look back through the archives on Teeter's page there were some posts on this that should cover some of the territory. If you have other specific questions, please keep asking. This isn't the norm with Aperts Syndrome, but it seems to be more prevalent in Aperts than in the general population (based on my very unscientific survey).
The brief answer is that helping them overcome this is just a long, hard, slow process. But you CAN make progress. Sensory integration (a thread that has been running for the last couple days) seems to address some of this in theory, although we don't have any experience with it to say that it works. In Krista's case, she will seem fine one day and much more prone to "wandering" on other days. It appears to be a motivational thing with her. When she's motivated to do something, she does fine. When she's not motivated, the brain turns off and it doesn't seem like anything can turn it back on other than her own desire.
See if you can find the earlier threads, and then feel free to ask if you have more questions.
Bob Horning ========================================================================= Date: Wed, 11 Mar 1998 17:03:05 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have been inquiring for Emily for SSI and was told also that we make too much money. So far we have been turned down for every program that the State or Govt. has to supplement. And it's not that we are rich, by any means.
Do the other states have income guidelines as well?
Janine ========================================================================= Date: Wed, 11 Mar 1998 19:01:26 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: softspot MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
I was so sorry to hear about your bad experience at the store. I am sure not looking forward to these kind of comments, but realize they are probably going to be made at one time or another. Is your baby Billy Foster on Teeter's page? I looked for him as I am trying to associate names on Email with faces. Anyway, I may not seem like a neutral party to this situation because my darling Carmen Rae also has Apert's; however, I think your little boy is darling as is every other baby I have ever seen. I agree with your daughter and commend her for her wonderful heart! She was absolutely right in saying that the mother of the little girl was the ugly one for not correcting such inappropriate behavior. So keep your head high and remember that old saying that it is not what is on the outside that is important but what's in your heart that really matters. It appears you have taught your children well!
Take care, Robin Hill
---------- > From: foster <foster@ICONTECH.COM> > To: APERT@LISTSERV.AOL.COM > Subject: softspot > Date: Tuesday, March 10, 1998 10:42 PM > > Laura, > > Hope you were not upset by my writting about Jakes story on Teeters Page. I > just wanted to let janie know about where I read about the softspot . Maybe > you can shed some light on what you may have found out from Jakes doctor ========================================================================= Date: Wed, 11 Mar 1998 19:28:49 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: SSI New York MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0027_01BD4D23.EAFEC080"
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Dear Janine, =20 =20 Us here in Pa get a medical card when we were denied SSI b/c of our = income the state couldn't deny us one b/c SSI said Kayla had a = disability. I would think that in NY you could get Medicaid the same = way we got a medical card.. We only live 10 mins from the boarder and I = always here clinics asking if we have a Medicaid from NY and then I = explain we are from PA. We don't go to any offices in NY but at one did = I had looked at a couple of places. =20 =20 Good Luck
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<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 = HTML//EN"> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Janine,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Us here in Pa get a medical card = when we were=20 denied SSI b/c of our income the state couldn't deny us one b/c SSI said = Kayla=20 had a disability. I would think that in NY you could get Medicaid = the same=20 way we got a medical card.. We only live 10 mins from the boarder = and I=20 always here clinics asking if we have a Medicaid from NY and then I = explain we=20 are from PA. We don't go to any offices in NY but at one did I had = looked=20 at a couple of places. </FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Good Luck</FONT></DIV></BODY></HTML>
------=_NextPart_000_0027_01BD4D23.EAFEC080-- ========================================================================= Date: Wed, 11 Mar 1998 20:55:38 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Stupid remarks Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bob,
You should have said, we have ear tubes too!! But that does not compare to what all of us have been through. A woman I was friendly with in playgroup for Early Intervention also went to a "typical" playgroup with other women and their kids. She said that it was amusing listening to them talk about their problems. They thought they had it bad when the washing machine or dishwasher broke. If they all knew what we have been through. I feel that people who are close with a person of a disability are much stronger than anyone else in the world. We have looked up to the top of Mt. Everest and climbed it. It may have been a tough climb but WE MADE IT ALL THE WAY TO THE TOP!!!!!!! We can do this because of the love we have for ourselves, our children, and all the others that are close to us.
Someone said to me the other day, "I envy your strength". What an odd comment. I have also been asked, "how do you do it?" I simply say, I don't have a choice. He is my baby and I love him. I want him to have the best possible life he can, and I will always be there to make sure that it happens. I don't understand how immature some people can be. Do they really look out the window everyday and think that the world is perfect and that nothing is bad? In simpler terms, stupid people irritate me. I never knew how cruel the world could be. I grew up in a small town and must have had shades on or just had no common sense. When my husband told me about how cruel the kids were to him about his hands and feet I couldn't really believe it. But now with Andrew and going out to stores and such, people really are that cruel.
Well, now that I have vented a little bit, I think I feel much better. Sorry if I lost anyone in that ranting.
Lynn Thornquist ========================================================================= Date: Wed, 11 Mar 1998 21:09:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Janine,
Massachusetts has income guidelines and you have to prove your child is actual disabled. Mass. does not really go by a yearly income though. They decide it based upon your monthly income (ofcourse if your making $80,000 a year then it would be based on yearly). We receive SSI payments but they are only $80.00 a month, but if my husband receives five checks in one month we do not get any money. This has started since I went back to work part-time. But to answer your questions it is the same for just about every state because most of the money you receive is from the Federal Government rather than your individual state. Only about 20% is from State.
I hope that helps.
Lynn ========================================================================= Date: Wed, 11 Mar 1998 21:41:57 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: don't react MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I've heard and seen many people, including myself, complain about the rudeness of adults in either stares or comments. But some people are by their very nature insensitive (i.e., rude) and will often make these insentive comments to people otherwise considered within the bell curve (i.e., normal).
There is, I am sure, in the human psyche, a need to feel good about yourself. But, when one doesn't possess enough self-confidence to feel good about your own self by your own accomplishments...they turn to the next available method, and that is to put other people down.
So, the next time someone is rude or insensitive...stop and realize how weak and otherwise disfunctional they must be in order for them to make a public display of ignorance in order for them to "feel better".
I decided some time ago that I would go nuts everytime someone looked at my daughter in some unusual way..I now write it off to their own inadequacies and they are only displaying their own emotional weakness.
I think by reacting to these people we are feeding into what they really want, they want to feel better by making someone else not feel very good about themselves.I think it's more appropriate to ignore them and not give them the satisfaction of a reaction, hence denying them of their "feel good statement".
One only has to watch Jerry Springer to see what a low common denominator the human race can sink to! I am sure that there is nothing new about that...as long as there have been people..I am sure there have been "bad apples" (no biblical pun intended). ========================================================================= Date: Wed, 11 Mar 1998 22:03:12 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Janine, It seems that most states have the same standards for denying any help. We made too much money also. I do not know what could be started to help all of us out. We just work harder and longer. Do not know the answer but I do know that some people obviously know how to work the system. Diane ========================================================================= Date: Wed, 11 Mar 1998 22:40:05 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: teasing MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jenngram wrote: > > I don't know if its good or bad, but I usually blurt out a short rendition of > JOrdan medical history before anyone an stare too long, or ask questions. > For us here in Florida, not one ugly thing has ever been said about Jordan by > adult or child.
Well Jenn, you are not alone....I too find myself giving people a mini story of why Nicole looks the way she does etc., etc., etc. Just the other day we went to get her portraits taken and as soon as I arrived and almost before the girl that was going to take her pictures even got a look at her...I had already started my song and dance, I don't know I guess with time I'll get used to it and will no longer feel I owe people an explanation. We also have not experienced anything negative yet with Nicole, maybe its the Florida weather????
Raquel.... ========================================================================= Date: Wed, 11 Mar 1998 22:40:57 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Subject: Re: bad experience Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-11 10:29:04 EST, you write:
<< bad experience >> Unfortunatly, all of you will run into people who are either rude (just because they are) or don't know how to ask about your child. We are all curious about others, just think, when you see your neighbor on crutches, you always want to ask "what happened?" Many individuals don't know how to ask, or what to ask, and children will ask (and say) anything. If you are given the opportunity to educate someone, take it, even if its only 30 seconds. I have a nephew who is deaf and blind, and I took him to the doctor for my sister, a resident came in and started asking Dan all these questions, so I just sat there and let him try to get an answer out of him!!! After about 3-5 minutes, I said, "sure am glad that your trying to talk to him, but he's deaf and blind", the resident turned red, and said oh, and walked out of the room, I never saw him again. So its not just the general public that you have to educate, its health care workers, therapists, etc., It is a lifetime job, and everytime you reach out to someone, you are making it easier for all people with disabilities or differences. Each of you need to prepare yourself for questions, and comments from total strangers, many times they really want to know, and in knowing they are no longer uneducated. Anyway, time to get off my soapbox, and hopefully all of you will take the opportunity to educate not alienate. Karen KH RN ========================================================================= Date: Wed, 11 Mar 1998 22:49:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Subject: Re: Sensory Intergaration Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-11 13:17:23 EST, you write:
<< Sensory Intergaration >> Many of the children I work with are orally defensive, tactile defensive and auditory defensive, this can be caused by many different reasons, a therapist works with the child to teach them to handle the different sensations that bombard us daily. For example, a child who is tactile defensive, we use brushing, yes we brush the childs body with a brush, orally defensive children we work with toothbrushes, pacifiers, touching there mouths etc., auditory stimulation is more difficult, as we are bombarded with so many sounds and some kids can't filter out normal sounds that we hear everyday, like the dishwasher, furnace, lights buzzing etc., it can take a while for a child to learn sensory integration but it is time well spent. Karen Kirby-Hall RN ========================================================================= Date: Wed, 11 Mar 1998 22:53:18 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Subject: Re: Fantasy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-11 15:34:10 EST, you write:
<< Hi. I am a Special Education teacher with an Apert 8 year old b >> His lack of attention may not be caused by his Aperts, does he have other neurological problems? Is he trying to tune out the group because its to much stimulation for him? Maybe he needs less group time or smaller groups. More info about him would be helpful. We have had neuropsych testing done on kids with this type of difficulty and the recommendations have been very helpful. Maybe suggest it to his parents, or try smaller groups, or more transition time, or sometimes these kids need a set schedule so that they can anticipate group time and prepare themselves for it. Just some thoughts, Karen KH ========================================================================= Date: Wed, 11 Mar 1998 22:51:14 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Unload
Hello all!
I have been hanging around, trying to be busy and not dwell on the inevitable. My grandmother's visitation and funeral are tomorrow and Friday. Dealing with all of this is not as easy as I thought it would be. I have been frantically searching for the proper clothing (the whole time my step mother is telling me not to worry, what I have is fine) I realized I am still trying to please and find approval from my grandmother, even in her death.
I am not processing all of this as well as I hoped I would. I thought I went through the most of it when my grandfather passed. He was verbally rejecting me constantly. My grandmother patronized me. Felt sorry for me, so I got "special" (speaking of words we hate, that's mine!) attention. Maybe the "sudden" death of my grandmother caught me off guard? I wasn't ready to deal with this yet. Although I got a good start last week with my post about my parents. As I have been thinking of it, I realized my grandparents' expectations were extremely high. If those with perfect bodies couldn't meet them, I was hopeless!
I know you all don't understand my family problems, but it helps to sort things out in writing. what all of this boils down to is: how am I going to channel the influences (good and bad) I received growing up to help me become a better adult? I just described the general population!
Jenn, when I meet someone new, I too jump the gun frequently and introduce my personality before the person has the chance to meet my disability. Like, if the person is five feet away, I'm smiling and ready to say something "profound" before they are close enough for their eyes to focus on the differences. I figure, if they meet ME first, they will accept my differences?? Hopefully.
Karen, I have been in your shoes before. (actually Kaila's) I hate it when parents become embarrassed by the things their children have broadcasted to the public at large and do not have the intelligence to address the child immediately. So the child presumes they were not heard and repeats the insult louder! ggrrrr! I have never attained the art of speaking what's on my mind - politely. So, I follow my mother's advice and don't say anything at all. ( I have been justfully accused of sticking my tongue out at the perpetrator) Besides, I don't believe they would be receptive to why I look this way, or I would snap into presentation mode and tell them the whole story complete with visual aids! Your sensitivity to such issues makes yourself and your children the better people.
Joanne, cold, windy, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 12 Mar 1998 01:15:24 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Catalina MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi everyone,
We are Gabriel and Carolina Dantur from Buenos Aires, Argentina, South America.
I'm 32 she is 25 and we have been married for two years.
Our first daughter Catalina was born on February 26th with Apert syndrome. As you may guess we were quite desperate and dismayed during the first days. Anyway after the initial surprise (no warning at all during pregnancy) we are starting to choose the best course of action in order to make our daughter the happiest girl in the world.
Luckily she is clinically very well, at home after 4 days at the hospital. Being breastfeeded from day 2. All of her organic functions are ok. Of course she has craneosinontosis, midface retraction and syndactilia.
Even if we have some excellent medical advise right here in Argentina, we are thinking to get a second opinion in the US. It is very expensive and far away so we want it to be really worth it. The help we need from you is the way to select the best Apert centre in the US to make an appointment there. We've heard good references about Dr. J.Marsh in St.Louis Missouri.
Of course any other info is more than welcomed. What should we expect and prepare ourselves. Tomorrow I'll send pics of Catalina for your slide show.
Thanks very much. ========================================================================= Date: Thu, 12 Mar 1998 00:06:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Detection before delivary Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Has there been any cases, to anyone's knowledge, where Apert Syndrome was detected before the delivery? I'm just curious. Thanks
-Andrea (in CHILLY Florida) ========================================================================= Date: Thu, 12 Mar 1998 01:35:17 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: soft spot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn, Evan has had several bony defects in his skull- (remember he has been "advanced " twice in his first 13 months). Some have completely closed up , hence the need to revisit things after 6 months) and some are still there. We keep an eye )or a hand) on them regularly especially after he had such subtle symptoms of increased pressure last summer. What I have learned is that these will vary from hour to hour and day to day. As Ev has a shunt, we are even more cognizant of changes and the implications of that, but also it means that his become pretty firm and extend past the bony margin at times, other times they sink in. This can vary due to hydration, constipation, valsalva (ie intrathoracic straining as in for a bowel movement or crying), position (prolonged lying- ie in the AM or after nap). Our neurosurgeon already has me pegged as being really hyper about it but he didn't live with the shunt infection and insidious onset of increased pressure leading to the second advancement in 6 months. So I am steadfastly unapologetic. My theory when dealing with neurosurgeons (who in my professional experience often tend to be somewhat lacking in the social skills dept- they treat ER personnel with the same contempt that they can treat parents- or worse!! ;) is to get parameters...ie how many millimeters, how many days, etc. in terms of when to call. If Jordan has a defect the size of a golf ball that is waxing and waning and generally not protruding , not to worry. If it is protruding like a golf ball and is firm, I'd start looking for irritability, sleepiness, ocular manifestations, etc. and call. What's another CT scan if it means you can sleep at night?!
Hope this helps! Also didn't Michelle Clark have to have some of her bony defects repaired??
Marianne Camous San Carlos, CA after an unbelievably picture postcard day in the 70's and sunny!! and I was off work to enjoy it!! I must be living right! ========================================================================= Date: Thu, 12 Mar 1998 00:27:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Detection before delivary Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
We had prenatal diagnosis at 28 weeks via ultrasound, then DNA confirmation at about 36 weeks from amnio. Supposedly were the first prenatal DNA dx per the folks at Johns Hopkins. This was in Spring 1996. I'm not sure of the article for the Journal of Prenatal Diagnosis was actually finally accepted.
Marianne Camous San Carlos, CA ========================================================================= Date: Thu, 12 Mar 1998 08:49:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I know Florida has income guidelines for most things. The one exception seems to be early intervention programs, which are funded by the state if you don't have the $$ to pay for it..some or all of it will be covered. ANd the definition of not having the $$ to pay is different than the medicaid/SSI programs. I guess they figure if your soo bogged down w/ medical expenses the development may lack, so they are willing to pick up the tab. Here in Florida its called Part H..I think it goes along w/ the right to having therapy in school once the kids are of the school age.
Jenn ========================================================================= Date: Thu, 12 Mar 1998 08:54:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Catalina MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Welcome Gabriel, Carolina, and Catalina! This list will be a wonderful place for information and support for you! We are Jim and Kelly Younkin. We have 3 children, our youngest, Sara, is 2 and has Aperts. We also, like most of us!, had no warning before delivery and spent the first few weeks in a daze trying to adjust. But we did, and she's wonderful! Sara has had 2 cranial surgeries, a shunt placement surgery, and 2 hand surgeries. I read that you're looking for possible places in the US. I can't say enough about the doctors and the craniofacial team at Children's Hospital of Philadelphia. Dr. Linton Whitaker heads the team there, although our plastics work has been done by Dr. Scott Bartlett. Our experiences there have been as good as surgical experiences get, and she looks wonderful! Of course, I'm sure everyone feels that way about their particular teams of doctors, but that's just this mom's opinion. Welcome to the list and take care! Kelly ========================================================================= Date: Thu, 12 Mar 1998 09:02:51 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Supplemental Security Income - New York MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Janine, We just received a Medical Access card for Sara.(in PA) We also made too much money to be accepted on an income basis, but there was a loophole that made it possible for her to qualify due to the fact that she has a genetic syndrome. We have good insurance coverage through Jim's job, but this card will cover anything that our private insurance doesn't cover, and we wanted to have a back-up just in case something ever fell through with his job. (Don't even want to THINK about that possibility!!) Anyway, your caseworker wherever you get Early Intervention should be able to tell you if such a loophole exists in your state, and even what the loophole # is. Once we went in and said we wanted to apply under the loophole (didn't even need the #) there were very few questions asked. All we had to do was supply documentation that said she had Aperts and we were covered a few weeks later. Don't give up--there must be a way somewhere! (As if you don't already have enough to do, huh?) Take care! Kelly ========================================================================= Date: Thu, 12 Mar 1998 09:18:23 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Catalina Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome to the Dantur family. I know this is all a shock and possibly even harder thanit has been for most w/ the possibility of traveling out of the country.
A far as doctors go, I do know of a few I will pass along, and I am sure you will hear about more.
There is a Dr. Wolfe in Miami..we do not use him, but I am sure those who do can give you a way to contact him.
Theer is a Dr. Sargent in Chatanogga, TN..same story as above
And we have been very happy with our doctors her in Tampa Bay, Florida
Dr. Ernesto Ruas 1-813-879-2727 he is our reconstructive surgeon Dr. Louis Solomon 1-813-898-7451 he is our neurosurgeon
We have just had our suture release/oribital advancement 3 weeks ago..our son Jordan is 6 mos. old now. We were very pleased w/ the results.
This may be a start, and I know there are many other good doctors that treat the children here on the list, but can not think of names. Like I said, I'm sure the other parents can provide you with that information.
Good Luck on your search and if I can help please feel free to contact me personally at Jenngram@aol.com
Jennifer Graham ========================================================================= Date: Thu, 12 Mar 1998 06:57:38 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Crouzon's Website Moved 2 New Location!! (fwd) Comments: To: Cranio-Serv <cranio-serve@pa.mother.com>, Cleft-Talk <cleft-talk@pa.mother.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi Everyone!!!!
The Crouzon's Website has now moved to a new location and yet I have my own domain!!!!!
Go to click ---> http://www.crouzon.org/
The Crouzon's Website is still being Under Construction so please have patience. We are still working on it.
Please go and check it out!!!!!! It has the new different looks and links!!! Enjoy and Cheer!!!!!
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Thu, 12 Mar 1998 07:09:49 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Thank You to Kristi for Hard Works! :-) (fwd) Comments: To: Cranio-Serv <cranio-serve@pa.mother.com>, Cleft-Talk <cleft-talk@pa.mother.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
I wanted to say that Kristi who is one of the listmember of the Crouzon's E-Mailing Discussion List have been working on the Crouzon's Website. I have alots of faiths in Kristi with all her professional talents in re-creating and designing the Crouzon's Website. She is very creative and have great taste in coordinating the colors and designs that matched so well..... I am so impressed and pleased with her works!!! I truely love the new looks of the website!!!!!!!
Thank You to Kristi for all the hard works!!! :-))
So let's hear it for Kristi by applauding for her!!! Yeah!!!!
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Thu, 12 Mar 1998 11:07:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks to everyone who repled to the SSI inquiry. I know, with everything else to do, now to play detective with SSI and figure out how to get around things. I have a question though, where does the medical card come from? Is it from Social Security or from Medicaid. And do you as the parent have to be on Medicaid to qualify your child or do they qualify because of the syndrome? I'm just not sure where to look for the info.
Thanks again.
janine ========================================================================= Date: Thu, 12 Mar 1998 08:06:48 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: FW: Teeter's Page MIME-Version: 1.0 Content-Type: text/plain
> Andrea, We knew Jackie Lynn had an "abnormality" at about 16 weeks > gestation......it was diagnosed as Apert's at about 20 weeks. I took > a blood test (AFP) about 16 weeks and it came back "high", so they did > it again. The second came back "high" as well so they did a level two > ultrasound: we could see the hands and head were unusually shaped. > They did an amnio which (of course) came back with nothing. We took > this information to a genetic specialist and he determined it was > Apert's. We actually had three other diagnosis before they decided it > was Apert's. > Jackie's mom, Kathy > Kathy Wittenburg @ 350-2962 > ========================================================================= Date: Thu, 12 Mar 1998 11:23:57 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Scary Experience Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Everyone:
I remember all of the stories about our kids taking their glasses off and thinking that because of Emily's hands she wouldn't be able to do that. To my surprise and delight she took her glasses off after about a week of having them. They also became a favorite thing to chew on. ( I now know never underestimate her).
Well, last night she was in her exersauser (stationary walker) and I was in the kitchen when I heard very loud gagging and hissing like noises. I ran inside to find the piece that wraps around her ear down her throat and she was gagging on it.
To say that my heart skipped a few beats would be putting in mildly. Thank goodness she was ok. So, now, for those of you whose children have had glasses, do you think that the band in the back of her head will alleviate this problem or not? I am on my way to the optometrist to see what he says about it.
She is only 7 and a half months old so telling her to leave her glasses on is not something she's going to listen to. Now I now why one of the mom's said it was the most expensive teething toy her daughter ever had.
Welcome to Catalina and family. We are the Krebs family from New York. We have a wonderful plastic surgeon and neurosurgeon here in NY and there is a very renowned doctor at NYU in New York City. If you are interested in any information, please e-mail me at Yonstein@aol.com.
Congratulations on the birth of Catalina.
Hoping that BJ and family are doing well.
Best Wishes,
Janine Krebs ========================================================================= Date: Thu, 12 Mar 1998 12:46:01 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Good source for SSI info - the gov't itself!! MIME-Version: 1.0 Content-Type: text/plain
SSI specific docs: http://www.ssa.gov/pubs/11000.html <http://www.ssa.gov/pubs/11000.html>
Social Security Admin: http://www.ssa.gov <http://www.ssa.gov>
<http://www.ssa.gov/pubs/11000.html> ========================================================================= Date: Thu, 12 Mar 1998 13:59:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Supplemental Security Income - New York Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think the child qualfies regardless of if the parent has medicaid or not. Thats how it is here anyway.
Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 12 Mar 1998 16:19:42 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wendy S. Pak" <Wendy_S._Pak@RIDLEY.ON.CA> Subject: List Server Mail MIME-Version: 1.0 Content-type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit
Dear listserver members:
I am just writing to say I am signing off from the list. I came back from a 4 day vacation and had over 120 messages from the list that were not relevant to me or my sister. Today, I already had 20 messages. My sister now has her own e-mail address so I will let her sign up on the listserver and she can filter through the mail. I am not unappreciative of the support or the list server, but some of us do lead busy lives and cannot sit for two hours reading all the mail. I enjoy reading about BJ and things of that nature, but I don't need to read personal messages between people. It has become a little unmanagable with the increased numbers on the list. My only request is that someone e-mail me directly if there is anything about Apert get togethers that I can bring my sister to so that she can meet others with Aperts.
For those new members, my sister Jeany has Aperts and she is 26 years old. She did not have the support that many of you are giving to your children so she suffers from low self-esteem and wants constant attention. Anyway, you can read my letter on Teeter's page if it is still there if you want more info. If you are around my sister's age, please feel free to contact her at shuijeanpak@yahoo.com. She would love to get mail. She can only check it once a week or so because her internet access is through an association. If she gets on the list server I'm sure by the time she checks her mail it will be overloaded!
I don't wish to offend anyone, but I think you understand how your mailbox can get overloaded. I teach and receive mail from my students and personal mail too so it adds up when I try to get around to checking my mail which is daily.
Thanks to all and good luck to everyone. I will sign back on eventually, but for now it has been a pleasure to be part of such a fine group. I will miss hearing how BJ is doing. Maybe Marjorie can add my e-mail address to the letter or someone can forward me the message when it appears on the list.
Thanks again,
Wendy Pak ========================================================================= Date: Thu, 12 Mar 1998 16:35:16 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: List Server Mail Comments: To: "Wendy_S._Pak@RIDLEY.ON.CA" <Wendy_S._Pak@RIDLEY.ON.CA> MIME-Version: 1.0 Content-Type: text/plain
Dear Wendy,
I understand your feelings and respect them. You've been one our strongest supporters and I promise we won't lose touch with you. Of course Jeany's Page will stay exactly how it is until either you or Jeany make a request to change it.
I assume you do know and understand about the daily digest option and don't feel that it is viable for you. I've suggested this numerous times for those having a problem with the volume of mail but so far, not one person who has complained has taken this simple step to minimize the impact of the listserv on their daily mail.
Thank you for all of your input and support.
---Don Sears ========================================================================= Date: Thu, 12 Mar 1998 14:35:59 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Scary Experience Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
First of all welcome to the Dantur's to the list. It is a wonderful list! You will see.
Hi Janine,
I had to make Brenna's strap myself because I could not find one locally that worked. This was mostly due to her small nose size, but it definately keeps the glasses on her face. One thing I want to mention though, is that you don't want to make/get a strap that is too elastic. I guess some kids try to pull their glasses off, and with an stretchy, elastic strap holding them on, you can imagine the rest. Brenna has always pulled her glasses down off of her nose and never forward. Thank goodness her straps are not very stretchy because I used such long pieces of velcro. Actually now, she is mostly leaving them on and asking for help when she wants them off. The are too hard to undo by herself. Another thing regarding the wraps, is they can be glued onto the metal/plastic part of the frame. WE also had to do this as they were always pulling off. They will wear out though, and the rubber pieces can come off.
Good luck, Robyn Johnston ========================================================================= Date: Thu, 12 Mar 1998 12:42:14 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Dr. Joana Magno" <magnomd@ALOHA.NET> Subject: Re: Detection before delivary MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Apert's was the probable diagnosis on an ultrasound done at 7 months gestation, interpreted by a perinatologist/geneticist who was correct, but had no tact and extremely poor bedside manners in breaking the news to me. Although it was quite a little shock, we were able to get information and to prepare for the baby's birth.
I understand that the genetic testing has become so sophisticated that we should be able to make a genetic diagnosis prior to birth.
Comments from others? ---------- > From: LUVS2WRTE <LUVS2WRTE@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Detection before delivary > Date: Wednesday, March 11, 1998 7:06 PM > > Has there been any cases, to anyone's knowledge, where Apert Syndrome was > detected before the delivery? I'm just curious. Thanks > > -Andrea (in CHILLY Florida) ========================================================================= Date: Thu, 12 Mar 1998 15:53:55 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Detection before delivary Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Andrea -
I had over 5 ultrasounds with Brenna and we had no clue! Even cought her blinking on video! She was breach and apparantly stuck up by my lungs. They tried eversion without success. I had really low fluid levels as well. I guess with the statistics being so rare, I don't know why they would have a genetisist do an evaluation - unless something was suspected.
Robyn Johnston
At 12:42 PM 3/12/98 -1000, you wrote: >Apert's was the probable diagnosis on an ultrasound done at 7 months >gestation, interpreted by a perinatologist/geneticist who was correct, but >had no tact and extremely poor bedside manners in breaking the news to me. > Although it was quite a little shock, we were able to get information and >to prepare for the baby's birth. > >I understand that the genetic testing has become so sophisticated that we >should be able to make a genetic diagnosis prior to birth. > >Comments from others? >---------- >> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> >> To: APERT@LISTSERV.AOL.COM >> Subject: Detection before delivary >> Date: Wednesday, March 11, 1998 7:06 PM >> >> Has there been any cases, to anyone's knowledge, where Apert Syndrome was >> detected before the delivery? I'm just curious. Thanks >> >> -Andrea (in CHILLY Florida) > ========================================================================= Date: Thu, 12 Mar 1998 19:39:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Volume of List Serve Mail MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0038_01BD4DEE.A39A5E40"
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Dear Family, =20 I'm in agreement with all of the comments that have discussed the volume = of the List Serve Mail. I do find it rather disturbing/annoying that = after the recent issue came up about going onto the "digest" that = according to Don's message not one single subscriber has changed their = option. I personally will stay here and have no problem with the amount = of mail that we receive. To those of you who did feel that there was an = enormous amount/volume of mail is there a reason you have not changed to = the digest option yet? Just curious. One of the best pieces of advice that was given was to include your = email address at the end of your post so that anyone who felt that they = wanted to respond personally to you could do so. This is a great idea, = and many have been using this. The other benefit to all of us when this = is done is that we can add your email address directly to our "address = book" so when the time arrives that we want to send you a personal note = just to say "hi", "congratulations", "happy birthday", etc., we can. = But, for those of you who still wish to send all of your comments, = suggestions, ideas, questions, etc., to the entire list that is fine = with me also. Just my own thoughts. Wendy. you will be missed. please feel free to email us directly = if you would like any information or updates.
Mark
dsprado@penn.com
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 = HTML//EN"> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000>Dear Family,</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>I'm in agreement with all of the comments = that have=20 discussed the volume of the List Serve Mail. I do find it rather=20 disturbing/annoying that after the recent issue came up about going onto = the=20 "digest" that according to Don's message not one single = subscriber has=20 changed their option. I personally will stay here and have no = problem with=20 the amount of mail that we receive. To those of you who did feel = that=20 there was an enormous amount/volume of mail is there a reason you have = not=20 changed to the digest option yet? Just curious.</FONT></DIV> <DIV><FONT color=3D#000000> One of the best pieces of = advice=20 that was given was to include your email address at the end of your post = so that=20 anyone who felt that they wanted to respond personally to you could do = so. =20 This is a great idea, and many have been using this. The other = benefit to=20 all of us when this is done is that we can add your email address = directly to=20 our "address book" so when the time arrives that we want to = send you a=20 personal note just to say "hi", = "congratulations",=20 "happy birthday", etc., we can. But, for those of you = who still=20 wish to send all of your comments, suggestions, ideas, questions, etc., = to the=20 entire list that is fine with me also. Just my own = thoughts.</FONT></DIV> <DIV><FONT color=3D#000000> Wendy. you will be=20 missed. please feel free to email us directly if you would like = any=20 information or updates.</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>Mark</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000><A=20 href=3D"mailto:dsprado@penn.com">dsprado@penn.com</A></FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0038_01BD4DEE.A39A5E40-- ========================================================================= Date: Thu, 12 Mar 1998 20:43:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: an update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone,
ready for some more good news. Guess who came out of his coma. He is consious and alert and even seems to getting his personality back. He hates having a bath and refuses to wake up in the mornings. They have weaned him to a half ventalator and he looks good. They wanted to move him to the floor but decided to wait a little while longer. There is an out break of chicken pox and that is the last thing BJ needs. Well I need to run just wanted to let everyone know how our little trooper is doing.
Marjorie ========================================================================= Date: Thu, 12 Mar 1998 18:00:53 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Good going BJ and family: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie, David, BJ, Jacob, Joshua and Katie:
What terrific news. Congratulations. Continued good wishes and love,
Scott ========================================================================= Date: Thu, 12 Mar 1998 19:57:04 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Good going BJ and family: Scott Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I have to add a great big ditto to this. Thank you so much for your post marjorie, You know we think about you all every day, and I love hearing your good news. Way to go Harmons!!
Pat in Calgary
>Marjorie, David, BJ, Jacob, Joshua and Katie: > > What terrific news. Congratulations. Continued >good wishes and love, > >Scott > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Thu, 12 Mar 1998 19:54:54 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thomas Troudt <ttroudt@SPRYNET.COM> Subject: here in Colorado MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0006_01BD4DF0.B9F3E2E0"
This is a multi-part message in MIME format.
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Hi to everyone, Our family consist of my husband, Tom, myself, Diana, and two sons, = Derek 3 yrs and Darren 11 months. Our son, Derek, was born with Apert = Syndrome. We have, like everyone a horrible war story of when our son = was born and the months that followed. We feel so isolated. I just = signed up on the listserver and am amazed at the number of families that = have a child with the same affliction. My husband and I are finally at = the point where we have been searching for other families to communicate = with. Is there anyone on this list that lives in Colorado? I am also curious to know if any of the children on the list have = been born with a problem with their diaphram. Derek had a detached = diaphram when he was born and had to have it repaired immediatley. It = caused his lung to collapse, his heart was on the right side, and his = abdominal organs were where his lung should have been. The surgery to = reattach his diaphragm corrected all the other problems. To this day, = he is an extremley healthy 3 yr old. To our knowledge, his development = is appropriate and he has wonderful social skills. We are just in = search of other families for support. It is good to know that there are = other families that have experienced some of the same things that we = have experienced with our child. God bless the little children, Diana Troudt
------=_NextPart_000_0006_01BD4DF0.B9F3E2E0 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.71.2016.0"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hi to everyone,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> Our family = consist of my=20 husband, Tom, myself, Diana, and two sons, Derek 3 yrs and Darren 11=20 months. Our son, Derek, was born with Apert Syndrome. We = have, like=20 everyone a horrible war story of when our son was born and the months = that=20 followed. We feel so isolated. I just signed up on the = listserver=20 and am amazed at the number of families that have a child with the same=20 affliction. My husband and I are finally at the point where we = have been=20 searching for other families to communicate with. Is there anyone = on this=20 list that lives in Colorado?</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> I am also curious = to know if=20 any of the children on the list have been born with a problem with their =
diaphram. Derek had a detached diaphram when he was born and had = to have=20 it repaired immediatley. It caused his lung to collapse, his heart = was on=20 the right side, and his abdominal organs were where his lung should have =
been. The surgery to reattach his diaphragm corrected all the = other=20 problems. To this day, he is an extremley healthy 3 yr = old. To=20 our knowledge, his development is appropriate and he has wonderful = social=20 skills. We are just in search of other families for support. = It is=20 good to know that there are other families that have experienced some of = the=20 same things that we have experienced with our child.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>God bless the little children, Diana =
Troudt</FONT></DIV></BODY></HTML>
------=_NextPart_000_0006_01BD4DF0.B9F3E2E0-- ========================================================================= Date: Thu, 12 Mar 1998 22:36:43 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Colorado
Hello to all of our new family members!
My name is Joanne and I am 33 year old with Apert's. I live in Ohio, although Colorado sounds nice. :-)
I was born about 15 years prior to the technology that has made available the operations and plastic surgery children are experiencing today. I have had the surgery to alieviate the prematurely fused skull and four surgeries on my hands to seperate and develop my thumbs. The other fingers remain fused, but I can wiggle my pinkie on both hands. I have not experienced the same things you or your children are experiencing, but I will share my life with you. Every now and then something will come up on the list that I can contribute to, otherwise, I am open to questions.
You have found a great source of infomation, love and support here. We are like one big family! Welcome!
Joanne, in COLD, Ohio!
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 12 Mar 1998 22:53:33 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: Catalina MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Gabriel Dantur wrote: > > > > Even if we have some excellent medical advise right here in Argentina, we > are thinking to get a second opinion in the US. It is very expensive and > far away so we want it to be really worth it. > The help we need from you is the way to select the best Apert centre in the > US to make an appointment there. > Thanks very much.
I want to welcome the Dantur's to our family. Bienvenidos a nuestra familia. I couldn't help but throw a little Spanish in there. As it has been said and will continue to be said you will find that this new family will be a very important part of your lives which has now changed very suddenly it will help you like you can not imagine. It has helped us and we have only been in the listserv for a couple of months.
First of all let me introduce ourselves...We are Jack & Raquel Miller we have a beautiful baby girl whom is now 5 months old she was born with aperts her name is Nicole. She also is very healthy and is a great eater (like her father). We also had no idea until she was born that she had aperts (so suprise) but we've adapted and you will too. Although it seems that you have already.
Our Neurosurgeon is Dr. John Ragheb 305 243-6536 he is with the University of Miami/Jackson Memorial Medical Center. Our Plastic surgeon is Dr. Anthony Wolfe 305 662-8234 and 305 325-1300
As Jenn mentioned in her e-mail everyone is or I guess should be happy with their doctors, I know we are, they are very positive people that do nothing but encourage you, which as you know that is much needed.
Dr. Wolfe has been very highly recomended to us, we have been told that he is one of the best in his field. We have seen some of the work that he has done with apert kids and it is incredible. The before and afters are breathtaking, you would never have known that this child ever had aperts. One of the reasons we are glad that Dr. Wolfe is Nicki's surgeon is because of the experience he has with aperts kids, he knows everything about them. He even went to Caracas, Venezuela and performed surgery to 6 kids with aperts. So we feel very confident with him and feel that he knows what he is doing and working with.
Dr. Ragheb was also very highly recomended to us and we like him very much, together they are a great team.
My husband Jack works for the University of Miami School of Medicine in the department of Pathology. There is an international division that the University of Miami has for the foreign patients, we are not sure exactly what they can do for you but he will try and get the number for you tomorrow and we will e-mail it to you.
We wish you all best and please call on us if there is anything we could do to help you.
The Millers, Jack, Raquel, Nicole, Michelle, Erica & Steven..... 954 384-8041 Weston/Ft. Lauderdale, Florida... ========================================================================= Date: Thu, 12 Mar 1998 23:18:43 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Welcome Troudt family MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We want to welcome the Troudt family to our family. Together we will help each other as time goes by and our beautiful children grow. We are here to listen and we are also here to learn.
Jack & Raquel Miller jara1@bellsouth.net ========================================================================= Date: Thu, 12 Mar 1998 21:13:17 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: an update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie,
Wonderful news!!! Way to go BJ! Hey, BJ's page looks great. IT is nice to put a face to that little guy who is such a fighter. He definately is a little trooper and obviously comes from a warmhearted family full of love! You are all great!
Big hugs for BJ and the rest of you. Robyn Johnston ========================================================================= Date: Thu, 12 Mar 1998 21:21:19 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: here in Colorado Mime-Version: 1.0 Content-Type: text/enriched; charset="us-ascii"
Hi <bigger>Troudt</bigger> Family and welcome
Sounds like Derek (and you) had a rough start. These little kiddo's are real troopers though as you will hear many times. This list has been a real blessing for me as far as support. I don't know what I'd do without it. My daughter Brenna, is almost 2 years old. She has Crouzons syndrome. WE are expecting a little boy soon.
Anyways, welcome.
Robyn Johnston mom to Brenna ~ aka the Plum
Eugene, OR ========================================================================= Date: Thu, 12 Mar 1998 22:54:50 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherrie <sdwarner@ROF.NET> Subject: here in Colorado Mime-version: 1.0 Content-type: text/plain; charset="us-ascii" Content-transfer-encoding: 7bit
Hi Diana,
I am more of a lurker here than a participant as I am not a parent of a child with Aperts, but a speech/language therapist with a child with Aperts on my caseload for a little more than 2 years now. I am in Colorado too and would be willing to pass on your email to the family that I work with (their son will be three this month) and see if they would like to hook up with you. They do not have email at this time, but I have told them about this list and occasionally have passed on email from the list and one of thier home health nurses and I have both given them info we have found on the internet. I am glad that you joined the list as I have seen lots of support and advice and encouragement and information sharing on this list. These kinds of lists are a great resource for parents...I belong to a couple of others that deal with the special needs my foster/adoptive daughter has and they are a true lifeline for me. Sherrie <sdwarner@rof.net> ========================================================================= Date: Fri, 13 Mar 1998 18:26:44 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol Hamzsak <carolh@HOTKEY.NET.AU> Subject: Apert's Testing MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Today I had a call from the genetics clinic asking me what questions I had as to my pregnancy as my doctor wrote tham a letter telling them that I had some concerns.
I told them that I wanted to have as many tests as possible to eliminate whatever I could. She said she was not sure as to weather they could test for Aperts or not but would check it out for me. She rang a few hours later and told me that there was someone in Brisbane that would do the test for me and match it up with a test that I will have later on either an amnio or CVS.
Does anyone know anything about this?? I need to get a sample of Ashleigh's blood first.
They do keep insisting that it is only a small risk of it happening again which I already know but as you would all understand the risks were the same the first time it happened.
Carol ========================================================================= Date: Fri, 13 Mar 1998 08:24:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Detection before delivary Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Nothing was detected w/ us as well..I had 3 ultrasounds..even one while they were inducing b/c they thought his head was his behind and that would have made him breech..andlet me say how much my husband wished we had known b/c he eas alone in trying to handle all of this b/c I was soo drugged up. he did a marvelous job and my OB and nurses sat with him most of the night. I guess w/ us being so young there was not even a thought of a problem..we'll know better next time.
Jenn ========================================================================= Date: Fri, 13 Mar 1998 08:27:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: an update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
All I can say if HOOORAY!!!!! I am sooo happy to hear of BJs improvement!!!! Have a wonderful weekend with him and the rest of your family. We share in your happiness.
Jenn9Tampa/St. Pete) Jenngram@aol.com ========================================================================= Date: Fri, 13 Mar 1998 13:18:05 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wendy S. Pak" <Wendy_S._Pak@RIDLEY.ON.CA> Subject: Digest Option and e-mail address MIME-Version: 1.0 Content-type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit
Dear Members:
I realized that I did not include my e-mail address for those that want to write to me. I only included my sister's. My e-mail address is wendy_pak@ridley.on.ca.
I did subscribe to the digest option rather than leaving the list server completely just to see what it did and if it was better. I just received my first digest and it is much better. Opening one message rather than 20 or so makes things easier. So for those that have not tried it, please do. I will use the digest option for a while and see how it goes so I will still be in touch with what everyone is doing.
Thanks Don and Mark for your support.
Wendy Pak wendy_pak@ridley.on.ca ========================================================================= Date: Fri, 13 Mar 1998 13:24:25 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Supplemental Security Income etc- Calif Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In California, near as I can figure, we make too much for SSI or Medi-cal (> 40K/yr which doesn't go very far at all here) unless it could be said with certainty that Evan would qualify for Regional Center Services after age 3. That works if the child has one of several specific dx ie CP, spasticity, mental retardation, seizure disorder, etc. I love the part about spasticity....Evan has hypotonicity so he doesn't get covered, but if he was at the opposite end of the spectrum with hyper tonicity, he'd be covered. Both fall out of the "normal" range and with either one he has been delayed with walking, etc. Go figure!! He does qualify for early intervention services (PT/OT/Speech) by diagnosis and we have decent health insurance but there is no additional coverage.
Marianne ========================================================================= Date: Fri, 13 Mar 1998 14:04:04 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: bad experience Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-11 22:41:09 EST, you write:
<< have a nephew who is deaf and blind, and I took him to the doctor for my sister, a resident came in and started asking Dan all these questions, so I just sat there and let him try to get an answer out of him!!! After about 3-5 minutes, I said, "sure am glad that your trying to talk to him, but he's deaf and blind", the resident turned red, and said oh, and walked out of the room, I never saw him again. >> This guy will probably never talk to another kid again. As an Emergency Department PA, I always talk to the kid first, then introduce myself to the parents. At a pretty early age, kids turn off to providers who talk over them, not to them. Although most of us peruse the chart first when available, there is also something to be said for encountering the patient fresh without the benefit of everyone else's preconceived ideas (That's how we're taught- but it often is not practical). On the other hand, it's obnoxious to have to restate the kid's whole history over and over again so that is a no-win situation.
My pet peeve story was the receptionist in the Children's Hospital Plastic Surgery Satellite office who had been watching Evan in the waiting room and when i turned to leave after the appt said "He's so alert!!" . Duh! Just because there are physical differences, doesn'r tell you anything about the brain underneath. I couldn't believe this came out of the mouth of someone who must see hundreds of "funny looking kids" a week! Guess the snappy comeback would have been "And you're not!" Otherwise we have not been much bothered by comments...there are the well-meaning little old ladies in Marshalls who want to pray for him, and occasionally kids will look but my older girls are fascinated by medical appliances like wheelchairs, crutches, etc. It comes down to which is worse, the hastily averted glance or looking??? I'm guilty of an occasional prolonged look at someone sometimes as my medical mind searches for a diagnosis- as long as it's accompanied by a friendly smile, I really don't think anyone tends to mind.
Where I get into trouble is an instance like Mon evening at a going away party for one of our docs. I entered a conversation with another PA, a doc and a nurse from our clinic. The PA had related her history of scoliosis treatment (braces, etc) and the doc asked if her fiance had also had scoliosis and cauthioned her to consider genetic implications before getting pregnant. He related a patient he remembered where both parents had had fairly severe scoliosis as kids then had a baby with severe deformities and retardation, etc. Apparently the parents each carried a recessive gene which expressed as their scoliosis, but let to major problems for their child. Their symptoms were mild enough for it not to have been even a consideration in terms of prenatal issues. The nurse made a comment along the lines of "how can people with these things even consider having children" and I went ballistic. Although our kids have a rough go of it early on, is it so rough that they should be denied the oportunity to have kids of their own?? By saying that doesn't one somehow deny the validity of the parent's life??? -OK- Rose and Jo Ann and Lark, and Andrea- you can chime in here. I get so much more bent out of shape when this stuff comes out of the mouth of health care providers who ought to have given it just a little bit more thought than the average bear.
Phew! OK I'll step off the soapbox now!
Marianne in Sunny SF Bay today!! ========================================================================= Date: Fri, 13 Mar 1998 12:45:20 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 03/13/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is Friday the 13th of an IRC Big Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Please join us! :-)
Date To Meet On: Friday, March 13, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below.
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Sat, 14 Mar 1998 10:29:25 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: teething Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Jenn
Amy started getting her teeth around age 12 months - in fact she bit me twice and was promptly weaned! She is now losing them at the age-appropriate time.
Cheers, Ann NZ
At 08:45 AM 10/03/98 EST, you wrote: > I was jsut curious if anyone's children, or if anyone themselves, actually >got their teeth at the "correct" time. I have heard and read so much about >Apert kids getting teeth late I find it hard to believe that Jordan is getting >his already. However, this is what everyone keeps telling me is occuring. Just >curious..Thanks in advance > >Jenn(in a really chilly Tampa/St. Pete... 48 degrees..ok..cold for south >Florida) > > ========================================================================= Date: Fri, 13 Mar 1998 15:46:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: soft spot MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hey Jenn, Don't ever be afraid to ask your doctors what's going on. This is the only way we can be knowledgeable about our kids. Keep pressing if you don't like the answer or don't feel the answer is sufficient. Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 13 Mar 1998 15:57:54 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: softspot MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
foster wrote: > > Laura, > > Hope you were not upset by my writting about Jakes story on Teeters Page. I > just wanted to let janie know about where I read about the softspot . Maybe > you can shed some light on what you may have found out from Jakes doctor . > It is a big concern of mine and whould be grateful for anything you tell me > about it. > I don't mind at all about the reference to Jake's surgery. Jake did have two soft spots, one on each side of his head above his ears. His doctors called him their heart shaped head. They did repeat his cranial surgery on December 23, 1997. They did this partly because of the softspots and partly as routine. Jake's doctors have a systematic approach to his surgeries. Let me just tell you, his head is as rounded and "normal" looking as you can get. We are very pleased with the outcome. As long as things go well, we will not need another cranial surgery until Jake is 6 years old. About the time they will do his midface advancement.
I hope this helps. Feel free to email me directly or call me if you have any questions.
Laurie Bailey jkb@elpaso.net 1-309-527-4496 ========================================================================= Date: Fri, 13 Mar 1998 14:28:18 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: bad experience In-Reply-To: <dedb7174.35098323@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 02:04 PM 3/13/98 EST, you wrote: The nurse made a comment along the lines of "how can people >with these things even consider having children" and I went ballistic. >Although our kids have a rough go of it early on, is it so rough that they >should be denied the oportunity to have kids of their own?? By saying that >doesn't one somehow deny the validity of the parent's life??? -OK- Rose and Jo >Ann and Lark, and Andrea- you can chime in here.
Ummmm, yes, I think I would've been a little bent out of shape, too . . . simply because that's not HER decision to make! (It's mine, and believe me, I don't take it lightly!) I don't know that it necessarily denies the validity of the parent's life, really, because I've had similar thoughts myself when thinking about whether I ever want to risk putting a baby through 20 yrs of surgery (not to mention MYSELF, having to witness it the 2nd time around, and feel all the old stuff, deal with all the old problems, from a different POV). My thoughts had nothing to do with my own worth, but everything to do with "could I, in good conscience, take the risk, especially when I know that there are babies with clefts, or without them, in other countries, who are ALREADY HERE who need parents?? Am I being selfish because I want the experience of biological motherhood 'just like everybody else'???" I still don't know.
I have to admit, though, that I have my own bouts of judgementalism on this one . . . like wondering why people who already have *several* children with expensive disabilities choose to have more, that sort of thing. My most notorious pet peeve, though, is fellow affected people who say, "well, we didn't even think about the risk before we decided to conceive--After all, who'd be better prepared to have a child with a cleft (Apert's, etc fill in the blank) than I would, since I had it myself"--As if that automatically makes us experts . . .
Truth is, for me, about 9 yrs. now into recovery from the stored-up effects of my surgeries, that MIGHT be true now. In many ways, I know it would--partly because I've started surrounding myself with accepting people who would think a baby with a cleft was totally beautiful and ESPECIALLY special, since they know me, and know my story, and accept all kinds of differences . . .
But I know for sure that it wouldn't have been automatically true at all 9 yrs ago, or ever, if I hadn't actually done some conscious looking at what having a cleft was like for me, psychologically . . . In fact, before I started doing some grief work, anger work, that sort of thing around the losses my parents and I had, my having a cleft myself would've, ironically, made the exact opposite be true--if I couldn't hear my all OWN pain and feel for the child I once was, how could I ever do it for a baby? The mere fact that I'd been through similar things, historically, would mean NOTHING, and really, would only add another generation of people who've swept things under the rug and not felt any emotions about them. (And, in another scenario, I've never understood how anyone, in an industrialized country like the US, could actually not "get it" that clefting, Aperts, etc etc is genetic? Duh??? Ignorance is bliss, I guess . . .)
Anyway--I'll hop off my judgemental little soapbox soon--I have no idea what I will finally choose when I have a partner to decide with me--but for me, the issue is always CHOICE. I work, BTW, in a group home for adults with autism and severe PDD--2 of whom are under the age of 19 (and who have become unmanageable for their parents to keep at home). I have very loving feelings for these residents, and I love and am continually amazed by what they've brought out in me since I've known them. BUT-- I think often, while I'm at work, that I know myself well enough to know that if any one of those residents were my child, I would have very serious problems coping, full-time, and bearing the responsibility that being their mother would bring. So, having the daily, real-life perspective, I have to look at it more deeply than just saying "all children are gifts from God, and I wouldn't want pre-natal tests, etc." I think sometimes on lists for parents of kids with special needs, there is that blanket sentiment, and if you happen to be someone who's chosen another path (or who feels that you would, of your own moral necessity, choose another path if you were faced with a similar situation), it's easy to feel sort of judged or misunderstood, at times . . . nuf said, I guess . . .
So, there are no easy answers for anybody, but back to what the clueless nurse said, I can't decide for anybody, nor can they decide for me, or even insinuate about what the "right" choice would be . . . noone can, unless they ARE the person that it would affect deeply, for years to come . . . And, BTW, according to research done by a father (who's a psychologist) on another "special needs" list--if any of us females who are considering having children thinks that we, as women, won't be ones who end up shouldering more of the actual care-duties (no matter how "evolved" and loving the male), we're almost guaranteed to be wrong. In real life, it's almost always the mother whose life is more concretely affected by the logistics of the disability/difference. Nobody's fault, really, but it just seems to turn out that way. According to this man's research, parents of kids with special needs are measurably more bound by traditional gender roles than other parents . . . just works out that way . . . Something for me to think about!
I get so much more bent out >of shape when this stuff comes out of the mouth of health care providers who >ought to have given it just a little bit more thought than the average bear.
Truth is, at least from what I've seen over the years, it's often the medical community that's the MOST bent out of shape by differences . . . maybe much moreso than the general population. Why do you think many plastic surgeons feel so "drawn" to become surgeons in the first place, if not some deep urge to "fix" human bodies? (Any doctor who spends a significant portion of his career making already "normal" body parts "more normal" is bound to have a lot of body shame in general . . . probably way more than the average bear.)Certainly not all doctors are like that, but I've definitely seen my share . . . BTW, I'd really like stats on how many doctors' daughters have serious problems with body image, that sort of thing--because I've known quite a few, in college, etc . . . (I heard, not long ago, that the GI dr. in MN who invented the stomach stapling procedure had several daughters--ALL of whom had serious eating disorders, as did the wife . . . Surprise, surprise . . ;) OK, I'll abandon this tangent now, since it's veered into the absurd, but hopefully you get the idea . . Thanks for asking/listening . . :) Lark (going back to sleep, now, in preparation for another graveyard shift . .:( ========================================================================= Date: Fri, 13 Mar 1998 19:45:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Detection before delivary Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I had no idea that Andrew had Apert. We knew that there might be something wrong with his hands because of my husbands hands, but nothing like this. I did go into premature labor at 31 weeks, had excess amniotic fluid, and labor lasted about 2 1/2 days. (UUHHHHGGGGG!!!!!) I believe long labors is characteristic and so is excess amniotic fluid.
My 2 cents.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Sat, 14 Mar 1998 14:09:42 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Paranoid Mums (was soft spot) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
How many times have I read this term "paranoid mom" on this Listserver? Why do we blame ourselves for caring about our children, wanting the best for them, and wanting to understand what is happening to them. What is important is that we are at peace with what is happening so we can convey that same acceptance to our children - if we are stressed or worried the children pick up on it.
>I just don't want to let a problem continue by being afraid of what the >doctors think. I'm just in unfamiliar territory, and if truely isn't a >problem..then ok too..great in fact!!
Well said - tell them just that. This is the message the "professionals" need to get - and maybe we need to stop using that term if we are feeling threatened, because if they were really professional in what they were doing we would be fully informed and not be feeling so inadequate and threatened.
Go for it Jenn and stick with it. In NZ it is written in law that we must be fully informed, and if the US doesn't have such statute then it must still be your MORAL right to be fully informed so that you can provide the best care for your child. Face it, if we don't provide the best care we are then accused of neglect!!!
Interesting - I don't recall reading any messages from "paranoid dads". Read into that what you will!! :-)
Keep smiling Ann NZ ========================================================================= Date: Sat, 14 Mar 1998 14:09:45 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Stupid remarks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>P.S. Here's another one for the books. A friend of ours was about to bring her son in for surgery on his brain (for something else, not Aperts). Somebody said to her, "I know how you feel. My kid had ear tubes put in last year." > >Duh.
Now come on Bob, everyone knows the ears are connected to the brain!
Ann NZ ========================================================================= Date: Sat, 14 Mar 1998 14:09:47 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Fantasy Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Not getting at you personally Kathi, but you have used terminology that pushes my buttons (just taking responsibility for my own feelings here!).
I have a 7 yr old daughter whose name is Amy, she attends a regular school and does most of the the "normal" things that other 7yr old girls do (not so hot at swinging on the bars), she has a wonderful vocabulary, and is in the 2nd to top reading and maths groups in her class (bearing in mind some of the kids are 6 months older than her I'm rather proud of that). She is a wonderful, complex, loving human being. It so happens that she was born with Apert Syndrome.
My daughter is not an Apert 7 yr old girl.
At 04:29 PM 11/03/98 -0500, you wrote: >Hi. I am a Special Education teacher with an Apert 8 year old boy.
Ann NZ ========================================================================= Date: Sat, 14 Mar 1998 14:09:48 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: softspot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Ann here again - we have been out of action for 3 days so I am responding to a LOT of mail. However it appears we have missed the message about Karen's experience at the store. We had a friend visiting recently whose daughter, at the age of 14 yrs, is over 6 ft tall. As a family they have had discussions about how to handle comments that come her way and she has come up with something along the lines of :
"What you are saying is a reflection of your own inadequacies."
I like it, but realise it will be a long time before Amy can say anything like that - and undoubtedly there will need to be further responses as I am sure that would not be received kindly by some people. Hopefully it would stun them long enough to give her time to get away! ========================================================================= Date: Fri, 13 Mar 1998 19:34:43 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: New addition to the Bailey family MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hey everybody!
The Bailey Family would like to announce the arrival of its newest member:
Jordan Elizabeth Bailey
was born on March 4, 1998. She weighed 7 pounds 9 ounces and was 20.5 inches long.
Everything is A-OK with her. The first things out of our mouths was "She has 10 fingers and 10 toes. It was such a relief to finally have her here. Even though we had all the tests done and everything came back fine, there was always the nagging thought in the backs of our minds about the 1 percent chance of a recurring Apert syndrome child.
Jake is doing pretty well with her. He likes to hold her. He has his moments of whining and wanting all my attention. But, I think he's pretty proud of his little sister.
As soon as I can, I'll send Don some pictures of the two of them together.
That's all for now.
As always, Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 13 Mar 1998 20:45:27 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: New addition to the Bailey family MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Laurie Ann Bailey wrote: > > Hey everybody! > > The Bailey Family would like to announce the arrival of its newest > member: > > Jordan Elizabeth Bailey > > was born on March 4, 1998. She weighed 7 pounds 9 ounces and was 20.5 > inches long. > > Everything is A-OK with her. The first things out of our mouths was "She > has 10 fingers and 10 toes. It was such a relief to finally have her > here. Even though we had all the tests done and everything came back > fine, there was always the nagging thought in the backs of our minds > about the 1 percent chance of a recurring Apert syndrome child. > > Jake is doing pretty well with her. He likes to hold her. He has his > moments of whining and wanting all my attention. But, I think he's pretty > proud of his little sister. > > As soon as I can, I'll send Don some pictures of the two of them > together. > > That's all for now. > > As always, > Laurie Bailey > jkb@elpaso.net
Congratulation's to the entire Bailey family I am sure that you are all so over joyed that is wonderful...We wish you much happiness and of course have lots of fun with your new bundle of joy.....
Jack & Raquel Miller jara1@bellsouth.net ========================================================================= Date: Fri, 13 Mar 1998 20:34:44 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: New addition to the Bailey family MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Congratulation on the new baby.
Michele ========================================================================= Date: Fri, 13 Mar 1998 21:45:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: New addition to the Bailey family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Congratulations Bailey family!!! You must be sooo proud and a little tired too. What a special time for all you. We are looking forward to the photo.
The Sieberts ========================================================================= Date: Fri, 13 Mar 1998 21:56:26 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: here in Colorado Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Troudts--
No experience here with the diaphram problem. So glad to hear that Derek is fine otherwise. We are the Sieberts and have an 8 yr old daughter and 15 month old son, Jonathan who was born with Aperts. We are going through all the normal surgeries now for the hands and skull. This is a tough year but hopefully it will ease up once all the fingers are released. We live in Houston and don't know any other families in the Colorado area. We too are amazed at the number of families joining the listserver, especially since this syndrome is supposed to be so rare. We are truly blessed to have this means of communication with each other.
The Sieberts George, Brenda, Melissa and Jonathan ========================================================================= Date: Fri, 13 Mar 1998 21:59:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: an update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
CONGRATULATIONS! What great news. We are so happy for all of you and pray for BJ's continued recovery.
The Sieberts ========================================================================= Date: Fri, 13 Mar 1998 22:29:16 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Detection before delivary Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Andrea,
We would have given anything to have been prepared. I had an amnio and 4 ultrasounds but nothing was ever detected except at the last ultrasound (3 days before my c-section), the ob said Jonathan's head was off the charts and he thought he saw meconium. He called another ob in to look but they told me it was nothing to worry about. Needless to say I was a basket case because I know what meconium anoxia (sp?) can do. I don't think our OB knew what was wrong, but I still think if he even suspected meconium he should have sent me for an advanced ultrasound. Needless to say, there wasn't any meconium when Jonathan was born. Or so I was told later. My epidural didn't take and they literally pulled Jonathan out while I screamed to hurry up. After that the lights went out and when I awoke our whole world had changed. The delivery room personnel were less than tactful during the whole experience. I didn't mean to get into all of this but it continues to bother me and I only wish we had of had the opportunity to learn about Aperts beforehand, especially to have prepared Melissa who was 7 then.
Brenda ========================================================================= Date: Fri, 13 Mar 1998 22:43:37 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Intro Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Zaengle Family,
Glad to hear theres no more surgeries in the immediate future. Good luck with the school. We still have some time before we have to fight those battles but I'm storing all the information I've gotten from everyone whose been there already. We've been in ECI since Jonathan was 3 months old and have been very pleased. He has OT once a week now and a teacher every other week. The teacher is absolutely wonderful. Jonathan is such a worker and they really do well together. Jonathan is 15 months old and walking all over the place now. He is so fascinated with his new skill and very proud of himself. He is such a sweet baby. We are getting ready for another cranial surgery on the 25th and I'm not looking forward to it. I hope Jonathan bounces back quickly. It will be different this time since he is doing so much more than when he was 5 months old. His hand surgeon said we could do his next release 6 weeks after the surgery on the 25th. Has anyone else done their surgeries so close together? I don't want to prolong the inevitable but I also don't want to push things to soon either.
Best wishes,
The Sieberts George, Brenda, Melissa and Jonathan ========================================================================= Date: Fri, 13 Mar 1998 21:50:05 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: new addition MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Laurie, CONGRATULATIONS!!! I am so happy for you! If and when I decide to have another child, I might be calling on you for some words of wisdom, and support! Give the kids a kiss for me, and get some MUCH NEEDED REST!!
Denise Graham ========================================================================= Date: Fri, 13 Mar 1998 20:21:03 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: New addition to the Bailey family Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Laurie, I am sooooooo jealous!!! ;-) Congratulations on your new precious little girl. I can't wait to see the pictures. I bet Brenna will be the same way as JAke for a while - a little jealous!
Anyways, way to go! Hopefully I wont be too far behind. :-) Robyn J. ========================================================================= Date: Sat, 14 Mar 1998 07:35:33 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: New addition to the Bail MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
CONGRATULATIONS!!!!
We are so happy for you.
Welcome to the new members,
We are the Ize Family. We have twin sons, they are two years old. One of them, witch is Felipe, was born with Apert. He had his graniofacial advancement when he was 4 months old. Felipe has four fingers and the thumb released on both hands. He is a very smart and healthy little boy.
Marjorie,
What a wonderful news! Thank you for the up dates.
Take care you all, The Ize Family from Oklahoma. ========================================================================= Date: Sat, 14 Mar 1998 11:33:19 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Congrats and Best Wishes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
CONGRATULATIONS to BJ and the Harmon family on the wonderful news. I hope this weekend finds BJ continuing to improve.
CONGRATULATIONS to the entire Bailey family on the birth of your new bundle of joy. Glad to hear everything is well.
Welcome to the Troudt family. We are the Krebs family in New York. We have two children, Nicholas and Emily, who was born with Aperts. She is 7 and a half months and has had two surgeries so far. I know you will find this family as helpful and supportive as we have.
Take care Everyone and Best Wishes to all.
Janine Krebs Yonstein@aol.com ========================================================================= Date: Sat, 14 Mar 1998 15:43:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: New addition to the Bailey family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Congratulations to all of the Baileys. I am sure Jordan is just as beautiful as Jake
Jenn ========================================================================= Date: Sat, 14 Mar 1998 20:25:16 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Family Village MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all!
I found this address in the internet and thought that it would be nice to share with you. Just in case if you don't know yet! Family Village A global community of disability- related resourses.
http://www.familyvillage.wisc.edu/
The Ize Family. ========================================================================= Date: Sun, 15 Mar 1998 15:46:41 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: bad experience Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>a resident came in and started asking Dan all these questions, so I >just sat there and let him try to get an answer out of him!!! After about 3-5 >minutes, I said, "sure am glad that your trying to talk to him, but he's deaf >and blind", the resident turned red, and said oh, and walked out of the room, >I never saw him again.
With all due respect Karen, I can't help feeling sorry for the resident! He sounds like one of the more aware professionals who doesn't treat the patient as though they aren't important to the process.
Admittedly he should have read the patient's notes first!!!!
Personally I encourage the doctors to talk to Amy and encourage her to respond. So far she avoids responding as much as possible, and trying to get her to take a pen so her plastic surgeon can see how she holds it has been a joke (I ended up taking photos and giving them to him!). Only in this way is she going to feel included in what goes on.
BUT the paediatrician actually persuaded her to read to him on our last visit! Then said she was reading better than his son, which absolutely delighted her. Little by little we will get there.
Ann NZ ========================================================================= Date: Sun, 15 Mar 1998 15:46:45 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Hand surgeries (was Intro) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Kia Ora Sieberts
>His hand surgeon said we could do his next release 6 weeks after >the surgery on the 25th. Has anyone else done their surgeries so close >together? I don't want to prolong the inevitable but I also don't want to >push things to soon either.
At age 15 months (13 May 1992) Amy had her first hand surgery (with both legs still in plaster!) and came out of theatre with bilateral abdominal flaps. Her thumbs were released and sewn to a flap of skin on each side of her groin. Three weeks later she went in again and they released between the ring and middle finger on each hand, sewing what had been the groin end of the flap to those fingers. We went home 3+1/2 weeks later on 26 June.
On 12 August she went back in for her next separation. So that was 3 operations within 3 months. She was fit and well (though naturally frustrated at times) and she is a good healer. Naturally we did not expect her to romp ahead in other areas while her body was concentrating on healing.
She went in again on 25 November but then there was a year gap to November 1993, and again around a year later to finish the work to the stage where she had 5 separate fingers on each hand. That gave her time to get used to them before she started school at age 5.
So though the initial surgeries were close together, it took 3+1/2 years to complete the work.
Your guideline will probably be that Jonathan is healthy and has tolerated all the anaesthetics and medications without any problem.
Good luck! Ann NZ