========================================================================= 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,