========================================================================= Date: Wed, 14 Jan 1998 22:07:46 -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: BJ's birthday Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie, What can I say except I am so glad for you. What a blessing knowing you all had such a good day today. Happy birthday to the special BJ. I am praying for more good days for you all.
Hugs, Robyn & the Plum
At 06:47 PM 1/14/98 EST, you wrote: >I will give you my address at work, they have been great enough to keep things >going while I have been gone. > >Marjorie Harmon >Special Education Teacher >Ronald E. McNair Middle School >11914 Dragon Lane >San Antonio Tx 78252 > >BJ would love to get a birthday card from Jordan. BJ really seemed to get >excited over the Christmas cards, we still have them all over the wall in his >room. > >Some GREAT news today. David was able to secure a loan against the mineral >rights to the land, so financially we are ok. I was worried that I was going >to have to go back to work and not be able to take care of BJ. more GREAT news >BJ was able to sit up today for about 4 hours, he played with his truck and >even laughed alot. He was able to eat a little bit today and all in all seemed >very happy. I am doing better today too, got several hours of sleep this >morning and seemed to have found some reserve strength and faith. > >Wishing everyone well from the ranch. (We are planning a small party this >weekend, with BJ and the kids, nothing much but still need to celebrate. > >Marjorie Harmon > ========================================================================= Date: Thu, 15 Jan 1998 01:44:38 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: BJ's birthday Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bravo BJ!!!
Every small step is cause for celebration. Several years ago when i worked with cancer patients undergoing radiation therapy, I can remember my supervising doc always telling patients to just try to do a little more each day. Doing a lot would wear them out, just small increments were the best. This really seems to apply to anyone facing physical (or mental) challenges!! "Baby steps"!! that's the key. I'm so glad you got some sleep- you were sounding like the stress was getting you down. We often forget to care for the caregivers. Remind yourself that this is a marathon, not a sprint and pacing is key!! Wear yourself out and you have few opportunities to "catch up". Thanks for keeping us up to date!! Our thoughts and prayers stay with you all.
Now it's time for me to put my money where my mouth is and get some sleep- it's my first week of working again and my body's all off schedule. Meanwhile, as I battle on with the purveyors of early intervention services in the Golden State who seem increasingly committed to majking the process complex, Evan is making developmental leaps. He's "cruising" the furniture now and has learned how to get into his room and scatter his equipment (suction cannisters, nebulizer bottles, tubing, etc) all over the place. "NO!" is becoming a joyfully repeated chorus in our house!! Now to work on speech with the speaking valve!!
Later- Marianne ========================================================================= Date: Thu, 15 Jan 1998 08:44:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: BJ's birthday Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
Its so good
Its so good to hear about BJs improvements..and that you got some much needed rest!!!! Have a great celebration..Ya'll deserve it!!!!
Jenn (St. Pete, FL) ========================================================================= Date: Thu, 15 Jan 1998 09:02:27 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> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Morning to all!!!
Yesterday, we met w/ Jordans neurosurgeon. of which 3 hrs were spent in the waiting room and 1 actually w/ the man..lets not get into poor Joes stress level as he took off 2 hrs from the hospital and kept having to call his docs to say we were "still waiting." Hes big for not wanting people to think hes taking advantage of the situation..which I don't see how they would think that, I mean hell..how many people would actually wish one of their kids had to have their head cracked open so they could take a few days off work??? Go figure!!!
Anyway, we are all set up for surgery on the 10th of Feb..and I must be getting ready myself..as I had my first dream last night about it..Them wheeling him out and me seeing him in ICU all huge and swollen, w/ venilators and the such..(even though he said they would take him off the venilator prior to taking himto ICU). I know you have all been down this road..or will be there soon. It give me hope and faith..which I need..esp after discussing the "risks"...all of which I knew, I just prefer not to hear them or be forced to think about them!!!
We're off to have round 2 of our shots..fun stuff..hope the office visits move a bit more quickly than yesterday!!!
Hope everyone is doing well..obviously we are all keeping way to busy!!
Marianne, hope work is going well..glad to hear about Evans progress, pretty soon he'll be telling you "NO!" right back!!
Marjorie, Hope BJ is doing well again today...and that he has a great b-day!!!
Joanne, hope the job search is working in your favor
Have a good day..stay warm and dry all of you in the upper corners orf the country,,hear ya'll in the Northeast are about to get hit again!! And to those in the lower corners..well just stay dry..its a mess today!!!
Jenn (St. Pete, FL) ========================================================================= Date: Thu, 15 Jan 1998 00:09:42 -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 MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Brenda, I wish at my office they can buy a software like that... it will make my job easier. Could you tell me the name of the software and do you know if it helps with technical languages? Best luck for Jonathan, I am sure he will make just fine!
BJ, our beloved BJ, I am so happy to hear such good news!! Happy Birthday!
Isn't this a great day?!
Elizabeth
GSieb91515 wrote:
> Elizabeth, > > I appreciate so much your offer to translate for me. We have hired a > new > nanny this week and she is wonderful. She does speak fairly good > english so > far. She is from El Salvador and has been in America for 3 years > now. I am > going to purchase a computer software program that allows you to type > in > english and it will automatically reprint it in Spanish or several > other > languages. I have a friend who used it and said it helped her with > her nanny. > We hope Albieta gets to come for her surgery soon. Jonathan had his > hands for > his first surgery in a soft type cast that he was out of in 2 days. > After > that they used gauze and wraps which we constantly had to redo because > > Jonathan kept getting out of them. We are scheduled for our next hand > surgery > on 2/23. Best of luck coming. > > Brenda Siebert ========================================================================= Date: Thu, 15 Jan 1998 19:50:16 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Elizabeth,
The name of the program is Power Translator by Globalink. I'm not sure about the technical languages as I have not actually purchased it yet. I'm anxious to get it myself but we are price shopping right now. It runs a little over $100. I'll let you know more specifics when I actually get it up and running. Have a great day!
Brenda ========================================================================= Date: Thu, 15 Jan 1998 19:53:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Pictures of Jonathon Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi!
Of course I remember our visit. You were so great with Jonathan and I look forward to us all having a get together at some time for everyone in the area. I'm so glad Sara is finally home and doing well. I talked to Tamara shortly after Christmas and she said everyone was adjusting to the trach. I know it must be difficult as we have been fortunate not to have travelled that road (yet). Glad your part of the group now.
Take care,
Brenda ========================================================================= Date: Thu, 15 Jan 1998 19:50:22 -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: Carlos and Claudia Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Happy Birthday BJ
Dear Marjorie and Family,
We are always thinking of you and wanting you to know how much happiness you're wished on this day and always...
BJ, it's your Day We hope your Birthday is as special as you are!
Have a very special Happy Birthday.
From your friend Felipe Ize and Family. ========================================================================= Date: Thu, 15 Jan 1998 20:17:40 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn,
Let us know when you come to visit your dad. We will definately make plans. Jonathan's coronal sutures were all that were fused as well and his head shape was ok. After his frontal advancement he looked fairly good. We wore a doc band for awhile and that really rounded out the back of his head and smoothed out some of the bumps from surgery. The doc band is really good for helping with head shapes that are positional but not for cranial syndromes. After about 2 months we realized the doc band was not helping in bringing out the forehead and it seems as though Jonathans heigth was getting taller so we dumped it. We learned of the total vault from a lady at the doc band office (Medical Brace & Limb) whose son has Pheiffers (sp) syndrome. She was unhappy with her surgery results and told us about the team in Chatanooga who specialize in the total vault. However, they recommend doing it before 14 months (the dura stops making bone after that). Our surgeon however would like to wait and see what growth we have on our own and have a little more time between surgeries. He said when they are older the bone is thicker and can be split to fill in the gaps. He is a very skilled surgeon and studied with the team in Dallas (Dr. Monroe/ Feuron) and we feel very confident with him. So at this point it's a wait and see how things look at about 18 months (head measurements) and we will make some decisions then. In the meantime, it's on with the hands. I know your nervous about Jordan's first surgery. I was a basket case for months ahead of time. Everyone was great and warned me about the swollen eyes (jonathan's lids actually turned inside out). It was not a pretty sight. The up side is he bounced back so fast I couldn't believe it. He didn't even need oxygen after surgery and was out of the hospital in 5 days and off the tylenal w/codeine at home in about 2 days. We were lucky in that Jonathan did not have hardly any hair so they didn't have to shave him. We did the zigzag incision which was recommended so that their hair doesn't part at the incision line. It looks a little dramatic at first but has healed very well and is not conspicuous at all. J has a little more hair now. Hang in there. The team meeting went well but in my opinion was with drs. that we aren't even ready for yet (orthodontics, gen'l denistry, oral surgery, etc. The ENT however said that Jonathan had alot of fluid in both ears so we may need tubes. We will go back in 2 weeks to see if it is due to the virus J had after Christmas (106 fever at one point) or if it's a real concern. What do some of the other teams do and what drs. are involved? Well I've definately gone on way to long and it's time for Melissa's shower and spelling words so good night.
Brenda ========================================================================= Date: Thu, 15 Jan 1998 21:27:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: BJ's story part II Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry for the long delay in posting this, but to say the least we have been busy.
Like I said when BJ was 4 he had his shunt put in. He seemed to reover slowly from the shunt placement. Our once active preschooler was now listless and easily upset over anything. BJ became very clingy and would refuse to leave mine or David's side. We decided that maybe it was best if we enrolled him in Pre Kindergarten. BJ seemed to handle the transisiton to school better than we did. We enrolled him in the school in our small town, he was the first child they had seen with Apert's or any severe disability. Almost instantly they tried labeling him as MR and wanted him in a self contained life skills classroom. Being a Special Ed teacher I knew enough about our rights to question their decision. We insisted that BJ have a complete assessment before he was placed.
So we had BJ's testing done and to the school's surprise he tested at where he should of been age wise. So BJ entered PreK. I guess I should of known that, that was the easy job. Now I had to educate a whole school of students and parents about Apert's. I also had to work on amking sure that all of BJ's needs were being met. I was able to get BJ his PT, OT and Speech Therapy on a 504 plan, and we were able to avoid the special education label.
BJ did so well in school though thahe amased us all, he was making friends easily, and was really starting to communicate easily with others outside the family. He was also doing well academically. By the start of Kinder the next year he knew all his letters, numbers and could read about 50 words. He continued to grow and develop like any kid. Except for the frequent trips to the doctor for the CF team, and ear infections.
His CF team that year decided that BJ was having obstructive sleep apnea, and decided to trache him. (Until a more indepth advancement could be done around 11 or 12) I never realized how much a little peice of plastic could change our lives. We had to relearn how we took care of him. And we said good-bye to just running around. Now we had to tote his suction machine and all the other stuff that went with the trache. But to my amasement we learned how to take care of it in just a few weeks. We were even feeling comfortable with it in just a month.
I hate to admit but I slept better at night, knowing that he was breathing easier. But with the trache came the infections, and pneumiona (sp.). We seemed to spend even more time in the hospital. But with spending more time around the doctors and medical staff, I discovered a very big need in our community. Our community (Pleasanton Texas) had no family support group for families with medically fragile children. So David and I set out to create one, we started with just a few families, now we have about a dozen. We seemed to help each other over the hurdles and it was nice to have someone to talk to who could understand our fears.
Well slowly BJ recovered enough to go back to school, and after fighting another round of battles to keep him out of special ed, he started first grade. BJ had a rough first grade year, we couldn't seem to find a teacher who was comfortable with all his problems. So I did what I thought I had to do, I forced the school district to pay for BJ to attend a private school in San Antonio. After several mediation hearings they agreed, and we enrolled BJ in The Winston School. It was a 45 mile drive from our house but one we were willing to make.
The decision was a perfect one for BJ, he soared in his self esteem and work. Our Shy kid quickly turned into a rambunctious 6 year old. He even started playing soccer (after arguing with league officials for weeks). We went to every practice and game and he loved playing. It was hard on him with the trache but he never complained. He also got involved with scouts. I could see him grow every day. He continued to amaze us all.
At the end of his 3rd grade year BJ decided that he wanted to go to school back in Pleasanton, so we moved him and his brother back. He continued to do great and we were pleased with the change in attitude at the school. that year BJ finally had his mid face advancement and his cleft palate repaired. This enabled him to pretty much eat anything he wanted. and boy did he make up for lost time. It was nothing but french fries and pizza for a month.
He continued to be like anyother kid, soccer, baseball, camp, scouts, and even skateboarding. He even took to driving last summer (The advantage of living on a ranch). BJ could never make up his mind what he wanted to be, it seemed to change each day. But no matter what I was certain that he would be able to do what he wanted to do.
It is amazing to see how much change can occur in 6 months. Maybe I should have seen this illness coming on but some how David, I and the doctors missed it. On July 28th 1997 BJ was at home playing Nintendo in the morning, he even played a game of Basketball with Josh and David, but the very next day he was on a verge of a coma fighting for his life.
The doctors have told us now, that they think that his shunt developed a pin hole leak some time in the days before, and that through this leak an infection began. We know now that it was encephulus. This infection quickly attacked his brain and other major organs. Because the shunt became infected it stopped working and his inner crannial pressure grew high. They thought it would be easy to fix, just put in a new shunt and he would be fine. But the infection was such that every shunt they tried putting in, became infected and clogged before it was in long enough to work.
He was in a coma for 28 consecutive days before he regained any consiousness. But for the next 5 months he would continue to slip in and out of small comas. He improved (stabalized) enough to come home shortly before Christmas. But he continues to be fighting for his life.
The doctors are pessimistic about his chances of a full recovery. They are telling us that hopefully in time BJ will improve enough to not need a ventalator to breath for him.
Don, I am sorry, I don't know how to finish this. Every time I try I break down into tears, and I can't do that in front of David and the kids. I have to try and be strong for them. They need my strength to find their own. I never imagined that I would be summing up my baby's life in just a few pages. I will try to finish this sometime. I hope you can understand and forgive me.
Marjorie Harmon ========================================================================= Date: Thu, 15 Jan 1998 21:34:25 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: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: A New Years Toast (a little late but you know me) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
A TOAST TO THE NEW YEAR
May you have:
Enough success to keep you eager, Enough failure to keep you humble, Enough joy to share with others, Enough trials to keep you strong, Enough hope to keep you happy, Enough faith to banish depression, Enough friends to give you comfort, Enough determination to make each day a better day than yesterday.
AUTHOR UNKNOWN
Source: More of . . . The Best of "Bits & Pieces" Rob Gilbert, Editor The Economics Press ========================================================================= Date: Thu, 15 Jan 1998 21:43:07 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Happy Birthday to BJ and greetings to all MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Having been lurking again for last two weeks with little time to write. To the Harmons, we sincerely hope that BJ has a good birthday (and that you guys take care of yourselves).
One of the reasons we have not written is that we have been preparing for Zach(ary) to have surgery tomorrow. When he was an infant, the hand surgeon indicated that he could only give Zach a thumb, a large finger combination, and a pinkie. The new hand surgeon (not really new, he has been there about 1 1/2 years) will try to give Zach three fingers and a thumb tomorrow. The doppler test (ultrasound) indicates he has vascular tissue to support separation but we won't know for sure until the surgeon gets into the area. Though only 8, Zach asked for this surgery because he is becoming self conscious about his hands. The smaller digits should also help with shoe tying, etc.
Getting Zach through the school week was a real chore. Had to get tomorrow's assignments done early so he does not get behind. All while maintaining older brother's schedule. But we made it. Zach is real interested in how his hands will look and work after the surgery but does not seem overly worried. Fortunately, he shouldn't miss too much school, etc. Surgery will be done on outpatient basis. Monday is a holiday and our school system has teacher workdays scheduled for Tuesday and Wednesday.
Again happy birthday to BJ and also welcome to all the new folks. I won't mention any names because I will probably leave someone out.
Take care for now.
Dan ========================================================================= Date: Thu, 15 Jan 1998 21:29:43 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello!
I had an interview this past Monday, the 12th. I am excited about the position, a special events coordinator. But I'm afraid the employers can't wait until the end of Feb. for me. That's when my VISTA will be over. I will find out tomorrow. I was hoping I could share more news with you. I sent seven resumes this week, all have gotten negative feedback. I have been on overtime for two weeks and it's catching up with my emotions. Not to mention physically. TGIF!!!! (tomorrow)
Happy Birthday BJ! God bless you and your family! Joanne, it's COLD, in Ohio ========================================================================= Date: Fri, 16 Jan 1998 08:19:16 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda,
Speaing of the back of the head being flat...I talked to our neurosurgeon the other day regarding this..as Jordan seems to have the problem as well..seems his to is more positional as we looked at the CT and his lamboid sutures (which would cause the flattening) are fine. I asked about havinga vault done later, and he said possible, but not probable..seems that as how Jordan refuses to lie down any more..always wants to sit up or be propped up..that pressure on the back of his head is decreasing and should correct itself over time. He said the same thing about taking a wait and see approach..apparently this is pretty common these days w/ the new SIDS guidelines and all. Who knows...but I am glad to hear Johnathan fared well after his surgery...Oh, how I worry..
We went for shots (round 2) and it did not go nearly as smmothly as round 1..something I was unprepared for..he screamed bloody murder for about an hour..then slept from about 4pm until 7am..normally this would be a good thing, but I was scared to death he was havinga bad reaction and the convulsions and seizures would start any minute. Joe convinced me that God surely wouldn't be so cruel as to make us deal w/ all these upcoming surgeries, and have a reaction to the shots...but like I pointed out..stranger things have happened!!!!! i am happy to report though..that Jordan is back to his old self, no worse for the wear...probablly some baby amnesia kicked in and its all forgotten!!!
As for team meetings..who knows..it strikes me as odd they want to meet after surgeries as opposed to prior, but who am I to question. We go March 5..and it will prob. be w/ the same group!
Good luck w/ the upcoming hand surgery..theres a surgery we are looking forward to!! We really want him to start using these hands of his!!! First things first though!!!
A very Happy Birthday to BJ Harmon..and a good weekend to everyone!!
Take care Jenn (St. Pete, FL..a definite toupee and skirt warning day..winds up in the 30 mph range) ========================================================================= Date: Fri, 16 Jan 1998 08:26:28 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> Organization: AOL (http://www.aol.com) Subject: Re: Zach Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Good luck to Zach on his surgery tomorrow, I am sure he will sail through and be so very pleased w/ his new partners!!
Jenn (St. Pete, FL) ========================================================================= Date: Thu, 15 Jan 1998 21:30:53 -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: Happy Birthday to BJ and greetings to all MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to everyone.
BJ: Happy Birhday! Marjorie: keep up the fighting and God bless you.
Zach, good luck on your surgery tomorrow!
Brenda, thank you for the information!
Joanne: keep trying on your job searching. God knows what he does, so he will give you the right job for you... you just have to give him a little help sending your resume. I am sure he will do the other part.
Warm hugs to all of you and have a good weekend.
Lots of rain here in my country. Does anyone need water? We have plenty down here.
Elizabeth. ========================================================================= Date: Fri, 16 Jan 1998 10:49:12 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: Happy Birthday BJ ! MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Marjorie, Please relay big Birthday Hugs and Kisses to BJ from the Muggli Family. I hope you and your family have a wonderful day.
I want you to know your family is in our prayers everyday. We pray God gives you strength and guidance.
Love to you, Jennie Muggli A Grandmother in Weimar, TX ========================================================================= Date: Fri, 16 Jan 1998 12:54:56 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> Organization: AOL (http://www.aol.com) Subject: Happy Birthday and Good Luck Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
HAPPY BIRTHDAY BJ. Hope your day is filled with good health and happiness.
Good luck to Zach on the surgery and to Joanne on the job search. Maybe they will wait for you until February.
Hope everyone has a nice weekend.
The Krebs Family ========================================================================= Date: Fri, 16 Jan 1998 14:36:39 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: RANGERJJC <RANGERJJC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Lactosorb Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone,
I'm new to the list and have some very exciting information. There is now new surgical technology available that is very beneficial. Traditional surgeries for craniofacial anomalies included multiple procedures that often called for implanting titanium plates and screws. Surgery would also have to be performed to remove those same plates and screws if need be. Also at some point, the titanium would remain forever. Now there is a product called Lactosorb. These are plates and screws that fully resorb within one year. They go away. Now there is no need to remove anything or have the possibility that a plate may shift or move as the child grows. You can check out more information directly from the company at www.lorenzsurgical.com ========================================================================= Date: Fri, 16 Jan 1998 15:29:48 -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"
My 1998 New Years resolution is to finally do something about my last year's resolution! That was to get an intro of our family to the Listserv and get info to Don for Teeter's Web page. We've been lurking for well over a year and have had some private conversations with some of you but haven't contributed to the Listserv. I just noticed I have over 500 saved messages in my Apert folder, so there's no need for anyone to welcome us publicly! We've followed all your ups and downs and feel like we know many of you like neighbors, especially the Harmons. Happy Birthday BJ!!!!!!
We are Joseph and Anne Zaengle from North Wales, PA phone: (215) 283-2586 e-mail: Joseph.Zaengle@Unisys.com
Our son with Apert Syndrome is named Quentin, born 3/1/93, so he's almost 5. He's exceptionally healthy, has had all the 'usual' early surgeries plus a spinal fusion, and is doing very well in a regular pre-school program. Quentin has two adoring sisters, ages 3-1/2 and 1-1/2. We've met a fair number of other Apert children thru Childrens Hospital of Philadelphia (CHOP) and in fact have some great pictures of 4 of them from the zoo this fall which I'll try to get to the web after I make sure it's OK with the other parents.
I'm in the computer industry and marvel at the great job Don has done with the Web site and the Listserv! It is really exciting to read the messages from parents and others world-wide when they discover these great resources.
Regards, Joe and Anne Zaengle ========================================================================= Date: Fri, 16 Jan 1998 15:40:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: HAPPY BIRTHDAY B.J. Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
Please wish B.J. a very very HAPPY BIRTHDAY for me. I hope his birthday is overfilled with happiness and fun and laughter.
Deep in my heart, I know B.J. will be alright and back to his old self again. After all, he is an Apert kid. And Apert kids are fighters!!!! We never give up.
He's in my thoughts and prayers,
-Andrea Gartner ========================================================================= Date: Fri, 16 Jan 1998 15:33:28 -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: Lactosorb Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi, thanks for this. My daughter was the first patient in BC to use the lactosorb resorbable plates. They were approved by the FDA in early '96 and by the Health Protection Branch in Canada the same year.
In fact I have a sample plate and two tiny screws that were given to me by the Lorenz reps following my daughter's surgery last year. They had been opened in the OR and therefore were no onger sterile, so couldn't be used. I asked if I could have them. Call me sentimental, but I carry these things around in my wallet.
I hope to have a surgery page for my daughter fairly soon and I'll let you know when it is up and ready to view. I hope to have pictures of the plates and screws too to give an idea of what they are like.
My daughter's surgery was July 1997. She had an orbital osteotomy (advancement and also raised by a bit).
Pat in Calgary, Canada.
> >Hi everyone, > >I'm new to the list and have some very exciting information. There is now new >surgical technology available that is very beneficial. Traditional surgeries >for craniofacial anomalies included multiple procedures that often called for >implanting titanium plates and screws. Surgery would also have to be >performed to remove those same plates and screws if need be. Also at some >point, the titanium would remain forever. Now there is a product called >Lactosorb. These are plates and screws that fully resorb within one year. >They go away. Now there is no need to remove anything or have the possibility >that a plate may shift or move as the child grows. You can check out more >information directly from the company at www.lorenzsurgical.com > > email to: bluenose@telusplanet.net Who takes the child by the hand takes the mother by the heart. German proverb ========================================================================= Date: Fri, 16 Jan 1998 14:38:01 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Glasses - help MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Robyn,
We had a TERRIBLE time trying to get Michelle to use glasses. She got them at 3 months old and they ended up being $130.00 teething toy!!
I am assuming she is using them for strabismus? Michelle also hated using the eye patches. Her doctor started her on eye drop therapy to exercise the eye muscle. The first course was Phospholine Iodide 0.125%, one drop in the bad eye each day (eventually we had to go up to twice a day). After using the drops for quite awhile we also used Neosynephrine eye drops to diminish the chance of cysts.
The thereapy worked but when we weaned her the eye would wander again. She had a second strabismus repair and then we used Isopto Hyoscine 0.25%, 1 drop in the good eye. It would dilate the good eye and make it blurry so she would have to use the bad eye to exercise the muscle.
Her eyes line up very well now in a primary gaze. Of course, with the underdeveloped (or missing) superior rectus muscles in Apert there is still a dip in the eye that is in the direction that they are looking when looking to the side.
Ask your ophthalmologist if this can help because you really want to get the strabismus taken care of in the early years before the brain permanently shuts off vision to that eye.
Good luck!
Christine ========================================================================= Date: Fri, 16 Jan 1998 15:25:35 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Get Together MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Wendy S. Pak wrote: > > On another note, does anyone know when there is another conference or an > Apert get together. My sister is really eager to meet others with Aperts.
Wendy,
I'm sorry you and your sister couldn't make it to my get together in Massachusetts last summer. The next one I am having is a very informal one while we are on vacation in San Diego, California on Saturday April 4th. The next one after that will be in September most likely in the San Francisco Bay Area this time. Unless, of course, any one else has plans to start get togethers.
Your sister may find it helpful to join my networking list. Then she can either call, write or e-mail others with Apert or their families.
I fell a bit behind but for those of you already on the list, I hope to have the new list out, with a newsletter, at the end of this month (if all goes well, hah!).
Best wishes,
Christine Clark ========================================================================= Date: Fri, 16 Jan 1998 16:06:37 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Re post surg sick MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Carol Hamzsak wrote: > > I have experienced Ashleigh being sick alot and catching anything that > goes around it just seems sometimes that Im at the doctors every > fortnight sometimes
Carol,
Michelle had the same problem until we put her on a prophylactic antibiotic during the school year. This is the 3rd year we are doing it and it has cut down significantly on the amount of infections she gets.
I know some people first think of how many antiobiotics are going into the system and buidling an immunity to them. Well, in the long run she is on less per year because she is only on one a day with an increase to 3 a day when an infection does take hold. But, before, she would be on 3 a day for up to three weeks to clear an infection, off for 10 days and right back on 3 times a day for 3 more weeks. It was constant!! She is down to about three infections a year and they either respond to the increased dose or we switch to another kind of antibiotic until it is all cleared up and then go back to the Augmentin once a day.
Something to try?
Best of luck,
Christine ========================================================================= Date: Fri, 16 Jan 1998 20:56:19 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Zach's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hi all,
Zach's surgery went well. Lasted just a little longer than expected and his skin graft was a little larger than planned. As usual, he threw up in recovery but this time made it home before getting sick the last time. Got home around 2:00 p.m. After snoozing briefly, he has done great. Keeping our fingers crossed for a good night.
Dr. Anagnos, Zach's hand surgeon was very pleased with the results. He should have much better movement with the new digits and existing digits. Dr. Anagnos deepened Zach's web space at the thumb and pinkie while at it.
Hope BJ had a good birthday. Hang in there Joanne. Best wishes to everyone else.
Dan ========================================================================= Date: Sat, 17 Jan 1998 10:39:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Wanted to let everyone know how we are doing.
BJ had a good Birthday. He seemed to feel better yesterday than he has in the past 6 months. He is really starting to show some good signs of recovery. We got BJ a remote controlled car that he can operate by barely moving his arms. He seemed to really enjoy it. (Especially chasing the cat). We also got a great telescope that reflects the pictures onto the ceiling in his room. He seemed to really like it. He always has loved space and everything. It is suppose to be a very warm 79 today and we are hoping to go outside some this afternoon. I have to run. Just wanted everyone to share our good news.
Marjorie Harmon ========================================================================= Date: Sat, 17 Jan 1998 09:23:17 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Glasses - help Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Christine,
You guessed it, Brenna has strabismus in both eyes and extreme astigmatisms (pardon my spelling) as well. The prescription is more for this I believe but it also helps her eyes tract better. I guess she cannot distinguish contrasting colors (black/white) very well. They look like shadows. I had the Dr. show me what she views and it was amazing. Our first pair of glasses which she got at about 8 months ended up as an expensive teething toy too! We thought we would give them to her and let her get used to them, but like everything else they ended up in her mouth!
I have some good news though, this barganing for computer play time has seemed to work!!! Yeah. I don't want to celebrate to soon, it would probably come back to haunt us, but she let me put them on her today without a fight. It seems using the computer as a reward really worked! She absolutely loves it, so she is willing to put her glasses on in order for her to play on the "pudie - pudie" as she calls it. WE haven't had to deal with the eye patches or drops YET... but I would bet before too long... The Dr's have talked about repairing the strabisimus in the future, after some of her facial surgeries are complete and the bones are more stable. I will ask him about the patch and drops when we go up next month. WE are not going to Seattle this time though, so we will see???
Hope all is well for you and your family! Robyn & the Plum
At 02:38 PM 1/16/98 -0800, you wrote: >Robyn, > >We had a TERRIBLE time trying to get Michelle to use glasses. She got >them at 3 months old and they ended up being $130.00 teething toy!! > >I am assuming she is using them for strabismus? Michelle also hated >using the eye patches. Her doctor started her on eye drop therapy to >exercise the eye muscle. The first course was Phospholine Iodide 0.125%, >one drop in the bad eye each day (eventually we had to go up to twice a >day). After using the drops for quite awhile we also used Neosynephrine >eye drops to diminish the chance of cysts. > >The thereapy worked but when we weaned her the eye would wander again. >She had a second strabismus repair and then we used Isopto Hyoscine >0.25%, 1 drop in the good eye. It would dilate the good eye and make it >blurry so she would have to use the bad eye to exercise the muscle. > >Her eyes line up very well now in a primary gaze. Of course, with the >underdeveloped (or missing) superior rectus muscles in Apert there is >still a dip in the eye that is in the direction that they are looking >when looking to the side. > >Ask your ophthalmologist if this can help because you really want to get >the strabismus taken care of in the early years before the brain >permanently shuts off vision to that eye. > >Good luck! > >Christine > ========================================================================= Date: Sat, 17 Jan 1998 09:23:19 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: post surg. sick Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Brenda and Jenn,
Just had to make a quick comment on this topic. Brenna has an extremely flat head posteriorly too. She always has. I'm not sure exactly why? We always had her sleep on her sides to try and help reduce it. WE even had her sleep on a doughnut pillow after her surgeries to see if it would help take pressure off the back. After her frontal advancememt, it was really noticable. One plastic surgeon mentioned correcting it, but none of the others so far, thought it would be medically necessary. Her Lamboid sutures are ok. Now that the Plum has longer hair, it is actually unnoticable - that is until bath time :-)
Brenda, I would love to see the distraction article when you get your scanner up and running. We are very interested in learning more on this topic.
Hope all is well with you both.
Robyn & the Plum, Rainey but a little warmer (40 - 50's) in Eugene OR
At 08:19 AM 1/16/98 EST, you wrote: > Brenda, > >Speaing of the back of the head being flat...I talked to our neurosurgeon the >other day regarding this..as Jordan seems to have the problem as well..seems >his to is more positional as we looked at the CT and his lamboid sutures >(which would cause the flattening) are fine. I asked about havinga vault done >later, and he said possible, but not probable..seems that as how Jordan >refuses to lie down any more..always wants to sit up or be propped up..that >pressure on the back of his head is decreasing and should correct itself over >time. He said the same thing about taking a wait and see approach..apparently >this is pretty common these days w/ the new SIDS guidelines and all. Who >knows...but I am glad to hear Johnathan fared well after his surgery...Oh, how >I worry.. > >We went for shots (round 2) and it did not go nearly as smmothly as round >1..something I was unprepared for..he screamed bloody murder for about an >hour..then slept from about 4pm until 7am..normally this would be a good >thing, but I was scared to death he was havinga bad reaction and the >convulsions and seizures would start any minute. Joe convinced me that God >surely wouldn't be so cruel as to make us deal w/ all these upcoming >surgeries, and have a reaction to the shots...but like I pointed out..stranger >things have happened!!!!! i am happy to report though..that Jordan is back to >his old self, no worse for the wear...probablly some baby amnesia kicked in >and its all forgotten!!! > >As for team meetings..who knows..it strikes me as odd they want to meet after >surgeries as opposed to prior, but who am I to question. We go March 5..and it >will prob. be w/ the same group! > >Good luck w/ the upcoming hand surgery..theres a surgery we are looking >forward to!! We really want him to start using these hands of his!!! First >things first though!!! > >A very Happy Birthday to BJ Harmon..and a good weekend to everyone!! > >Take care >Jenn (St. Pete, FL..a definite toupee and skirt warning day..winds up in the >30 mph range) > ========================================================================= Date: Sat, 17 Jan 1998 09:23:21 -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: Zach's Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dan Congrats on Zachs success! Hoping for a speedy recovery!
Robyn & the Plum ========================================================================= Date: Sat, 17 Jan 1998 09:31:37 -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: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Way to go Harmons! Another step forward!!! WE are thinking of you. Enjoy that weather - soak up a little of the suns warm rays.
I loved the New years toast you sent. IT is worded wonderfully.
Take care, hugs, Robyn & the Plum
At 10:39 AM 1/17/98 EST, you wrote: >Wanted to let everyone know how we are doing. > >BJ had a good Birthday. He seemed to feel better yesterday than he has in the >past 6 months. He is really starting to show some good signs of recovery. We >got BJ a remote controlled car that he can operate by barely moving his arms. >He seemed to really enjoy it. (Especially chasing the cat). We also got a >great telescope that reflects the pictures onto the ceiling in his room. He >seemed to really like it. He always has loved space and everything. It is >suppose to be a very warm 79 today and we are hoping to go outside some this >afternoon. I have to run. Just wanted everyone to share our good news. > >Marjorie Harmon > ========================================================================= Date: Sat, 17 Jan 1998 12:42:25 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> Organization: AOL (http://www.aol.com) Subject: Re: Glasses - help Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robyn, I did talk to my friend who's daughter had glasses at a very young age. She said their saving grace was that Meredith got hers at 4 months of age when she didn't have the physical ability to take them off. Then she stuck with them as she could see so much better with them. That is why the computer play might be the perfect solution!! Surely she will see much better and enjoy it more with the glasses (especially with the astigmatism). As someone who was 20/200 in one eye when I first got glasses (as an adult) I found that you don't realize how much you can't see until you can see it!! Hang in there mom!! As a parent I keep reminding myself that I'm older and meaner and (occasionally) more stubborn than my kids for a reason ;) Ciao- Marianne ========================================================================= Date: Sat, 17 Jan 1998 12:37:57 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Update In-Reply-To: <f4257426.34c0d0d1@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie, I'm so happy to hear that BJ's doing better! The normal liver function test, especially, sounds REALLY good! Still sending positive thoughts your way, Lark in Portland PS Tell BJ to stop chasing that poor cat! :) ========================================================================= Date: Sat, 17 Jan 1998 17:00:57 +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> Subject: Re: Update
Hello Marjorie!
What great news to hear on a cold, SNOWY, day! I am so happy for BJ and your family! I found interest in the telescope you got for him. It sounds like something my nephew would be interested in. Can you elaborate?
Congratulations Zach! Warm wishes for a speedy recovery!
Joanne, it snowed, but it's already gone, in Ohio ========================================================================= Date: Sat, 17 Jan 1998 17:34:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie and family,
Yeah!!! I am so happy to hear of BJ's good birthday..not to mention good presents!! POOR KITTY!!! Ha!! Ha!! Hope he continues to do well..he deserves it!!
Jenn ========================================================================= Date: Sat, 17 Jan 1998 17:43:47 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> Organization: AOL (http://www.aol.com) Subject: Re: shots Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone..I have a question relatd to normal kids issues..not really Apert involved...
After shots, did your kids act funny..sorta loose their personality and get real sleepy for a few days??? Jordan had his 2nd round Thurs. afternoon..and my normal Jabber Jaw has turned silent..a bit more whiney..and much more sleepy (could be why hes whiney)..Anyway, just curious b/c you know how I worry..and as soon as the talking stopped I started fearing hearing probs, and kept trying to startle him (which I succeeded)..not nice I know!!!!!
Anyho...we wnt for pics at Sears and they turned out super..of course we ordered far more than we will ever need, buti guess thats the norm not the exception. We even got a smile in 2 of them..one of them he has his tounge hanging out while hes laughing..Too cute!!! And they were great w/ him.
well..the little guy is calling..along w/ the big one for help..dads!!!!!!
Jenn ========================================================================= Date: Sat, 17 Jan 1998 17:38:16 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: shots MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jenn:
No, I don't remember Seth having that kind of reaction to shots. If you are feeling worry, go ahead and call his doctor. If there is a problem it can be taken care of quickly, if not the doctor can relieve your anxiety. Once I double dosed Seth with antihistamine. I was really worried but I was also really embarrassed that I had done such a stupid thing. I called Seth doctor and told him what I had done. He said, "Don't worry, Seth should sleep really well tonight." Peace, daj Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Sat, 17 Jan 1998 19:13:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: How Many-- How Much Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
As evertone knows David, BJ and the rest of our family has been going through a rough time lately. I have found myself beneifitng from motivational sayings and such. I thought I would share this one with the group. Lately it has been little things like this which make it easier to get through the day. Marjorie
TOPIC: HOW MANY??? HOW MUCH???
How many slams in an old screen door? Depends on how hard you shut it.
How many slices in a loaf of bread? Depends on how thin you cut it.
How much good inside a day? Depends on how good you live them.
How much love inside a friend? Depends on how much you give them.
AUTHOR UNKNOWN
http://www.motivateus.com/poslnk.htm its a great new site filled with motivational material and all kinds of other good stuff. ========================================================================= Date: Sat, 17 Jan 1998 19:24:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: A Nice Joke for a change Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sometimes it is Better to laugh than cry, there should be 1 in here at least that everyone finds funny.
Actual Bumper Stickers!!!
* The sex was so good that even the neighbors had a cigarette.
* If you smoke after sex, your doing it too fast.
* I don't suffer from insanity, I enjoy every minute of it.
* If ignorance is bliss, you must be orgasmic.
* Good girls get fat, bad girls get eaten.
* We are Microsoft. Resistance Is Futile. You Will Be Assimilated.
* Jesus is coming, everyone look busy.
* Born free... taxed to death.
* The more people I meet, the more I like my dog.
* Some people are alive only because it's illegal to kill them.
* A bartender is just a pharmacist with a limited inventory.
* A cat almost always blinks when hit in the head with a ball peen hammer.
* There's too much blood in my alcohol system.
* I used to have a handle on life, but it broke.
* Don't take life too seriously, you won't get out alive.
* WANTED: Meaningful overnight relationship.
* You're just jealous because the voices only talk to me.
* BEER: It's not just for breakfast anymore.
* I got a gun for my wife, best trade I ever made.
* So you're a feminist...Isn't that cute!
* Jesus may love you, but he won't respect you in the morning.
* Anyone can give up smoking, but it takes a real man to face cancer.
* I need someone really bad... are you really bad?
* If, a two letter word for futility
* I don't care, I don't have to.
* Beauty is in the eye of the beer holder.
* Earth is the insane asylum for the universe.
* To all you virgins, thanks for nothing.
* I'm not a complete idiot, some parts are missing.
* Horn broken, watch for finger.
* All men are idiots ... I married their king.
* The more you complain, the longer God lets you live.
* My kid had sex with your honor student.
* Earth first...we'll mine the other planets later.
* Give pizza chants.
* Don't hit me. My lawyer's in jail.
* This isn't burger king, you can't have it your way.
* How can I be overdrawn, I still have checks!
* If something goes without saying, LET IT!
* If at first you do succeed, try not to look astonished.
* Help wanted telepathy: you know where to apply
* Work is for people who don't know how to fish.
* IRS We've got what it takes to take what you've got.
* Hard work has a future payoff, laziness pays off now.
* Jesus loves you... everyone else thinks your an asshole.
* Life's a buffet... so eat me!
* I'm just driving this way to piss you off.
* Jesus paid for our sins... now lets get our money's worth.
* Reality is a crutch for people who can't handle drugs.
* Missing your cat? Try looking under my tires.
* I love cats ... dead ones
* I love cats ... they taste just like chicken
* Out of my mind. Back in five minutes.
* Keep honking, I'm reloading.
* Prevent inbreeding: ban country music.
* As long as there are tests, there will be prayer in public schools.
* Spotted owl taste just like chicken.
* Hang up and drive.
* Happiness is a belt-fed weapon.
* Laugh alone and the world thinks you're an idiot.
* Snatch a kiss, or vice versa.
* I don't have to be dead to donate my organ.
* WARNING! Driver only carries $20.00 in ammunition
* Sometimes I wake up grumpy; other times I let her sleep
* I want to die in my sleep like my grandfather ... Not screaming and yelling like the passengers in his car.
* Tow-ers will be violated
* Montana -- At least our cows are sane!
* Lord save me from your followers.
* Meat is yummy!
* Mean people rule!
* Guns don't kill people, postal workers do.
* Ask me about microwaving cats for fun and profit.
* Born again pagan.
* God must love stupid people, he made so many.
* I said "no" to drugs, but they just wouldn't listen.
* So many recipes, so few cats.
* Cats... the other white meat.
* The gene pool could use a little chlorine.
* I didn't fight my way to the top of the food chain to be a vegetarian.
* Your kid may be an honor student but you're still an IDIOT!
* There's too much youth, how about a fountain of smart.
* Save a mouse... Eat pussy!
* P.E.T.A.: People Eating Tasty Animals
* Change is inevitable, except from a vending machine.
* It IS as BAD as you think, and they ARE out to get you.
* When you do a good deed, get a receipt, in case heaven is like the IRS.
* Smile, it's the second best thing you can do with your lips.
* Friends don't let Friends drive Naked.
* Wink, I'll do the rest!
* Rainy days and automatic weapons always get me down.
* I took an IQ test and the results were negative.
* When there's a will, I want to be in it!
* Okay, who stopped the payment on my reality check?
* I love animals...they're delicious.
* If we aren't supposed to eat animals, why are they made of meat?
* Time is the best teacher; Unfortunately it kills all its students!
* It's lonely at the top, but you eat better.
* Reality? That's where the pizza delivery guy comes from!
* Forget about World Peace.....Visualize Using Your Turn Signal !
* Warning: Dates in Calendar are closer than they appear.
* Give me ambiguity or give me something else.
* I know what you're thinking, and you should be ashamed of yourself.
* Don't drink and drive, you might hit a bump and spill your drink.
* Elvis is dead, and I'm not feeling to good myself.
* We are born naked, wet and hungry. Then things get worse.
* A dirty mind is a terrible thing to waste.
* Always remember you're unique, just like everyone else.
* Lottery: A tax on people who are bad at math.
* Friends help you move. Real friends help you move bodies.
* Very funny, Scotty. Now beam down my clothes.
* Beam me up Scotty, this planet sucks!
* Puritanism: The haunting fear that someone, somewhere may be happy.
* Consciousness: that annoying time between naps.
* I souport publik edekasion
* hoket on foniks werked fur me
* Be nice to your kids. They'll choose your nursing home.
* 3 kinds of people: those who can count & those who can't.
* Ever stop to think, and forget to start again?
* Diplomacy is the art of saying 'Nice doggie!'... till you can find a rock.
* 2 + 2 = 5 for extremely large values of 2.
* I like you, but I wouldn't want to see you working with subatomic particles.
* Sex on television can't hurt you unless you fall off. ========================================================================= Date: Sat, 17 Jan 1998 20:47:46 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: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: lactosorb Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi, Blake surgeries included metal plates and mesh in the forehead . The surgery he is scheduled for on January 27 will included absorbable materials. Of course my daughter knows specifics but I'm sure this is the same material that will be used. Will let you know how things go.
Thanks for the info,
Gaylann, Blake's Grandmother Cordova, Tennessee ========================================================================= Date: Sat, 17 Jan 1998 21:06:23 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi all:
Glad to hear that Zach's surgery went well. Hope the recovery goes smoothly.
Marjorie, I'm so happy that BJ had a nice birthday and you all enjoyed it (except your cat). Speaking of cats, I got a big kick out of your jokes that you sent. We can all use a little levity during our day.
Jenn, I'm glad Jordan's photos came out adorable (did you have any doubts?) As far as the shots go, some kids get reactions to some of the shots. Did you give any Tylenol at all? I would check in with the doctor if it doesn't go away after a day to ease your mind.
Hope everyone else is doing well, especiall our Canada familes with all of the ice up there. Hope you have power by now.
Janine ========================================================================= Date: Sat, 17 Jan 1998 21:37:52 -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: The Stroupes <stroupes@IX.NETCOM.COM> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hi all,
Marjorie, we are so glad BJ had a good birthday. Hope things continue to improve. Enjoyed the jokes. I subscribe to a humor newsgroup just to brighten my day.
Jenn, hope Jordan is back to normal soon. Our kids usually were puny (check spelling) for 24 hours after their shots.
Joanne, hope you are hanging in there.
To all, Zach has worn glasses since about 2 years of age for astigmatism. He didn't want to at first, but grabs them first thing in the morning now. We had quite a time fitting them. We initially went with ear pieces that wrap around and changed the nose piece to a rubber or plastic nose pad that came all the way across to keep the glasses up so that they did not pinch his nose and keep him congested.
Zach is doing well. The hand has not hurt but he complains that the area in his groin hurts where they took the skin graft. He took 2 children's Motrin last night and only 3 tonight (less than the recommended dose) so he must be doing well. He is such a trooper.
Well, I have rambled enough.
Take care,
Dan ========================================================================= Date: Sat, 17 Jan 1998 21:01:29 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Shots MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello Jenn,
Regarding to the shots, Felipe and Rafael never had any problem after all of them. We ways gave to them children's tylenol 30 minutes before living home to the clinic. Another thing that helped was to massage same vicks vaporub where they got the shot to prevent getting sore.
Marjorie,
It's so good to know that things are getting better and BJ had a good birthday.
Best wishes to all. Ize Family. ========================================================================= Date: Sat, 17 Jan 1998 23:33:53 +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: Hanging on!
Hello to all!
I hope everyone is comfortable in their part of the world. Not to hot, not to cold!
With the job search, I am hanging in there. With anticipation, I will look at the Sunday paper tomorrow. Hoping there is a job listed just for me! I'll admit, it hasn't been a walk down the golden brick road, but I'm okay and that's what's important. A friend really boosted my spirits last night. Between him and having all of you, what more could a girl want? You all have been a great source of encouragement for me! Thank you!
Joanne, in Ohio ========================================================================= Date: Sat, 17 Jan 1998 23:51:56 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> Organization: AOL (http://www.aol.com) Subject: Re: shots Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn, It's really common for kids to feel crummy after shots. Keep the tylenol or ibuprophen flowing on schedule!! Mine have done better with each succeeding round. Also kids now get even more separate immunizations each time as HIb and Heb B have been added to the good old DPT and MMR so the likelihood of getting something that makes them feel bad is even higher. It usually only lasts a day or two. The thing I have found more noticeably with Evan is that he's always tired after a trip to the Dr.- any Dr. After shots, he's really pooped and comes home and sleeps! I guess the stress and all the energy expended crying takes it's toll! This too shall pass.
Glad the photo shoot went well! You may think you have too many, but I've found that all the many doctor's offices want one for their "board". and all the relatives,,,and friends...My mom always takes a bunch for people I barely know!! I usually have a hard time keeping even one.
Marjorie, Good to hear BJ had a great day!! ..and I'll bet the cat is even glad BJ feels good enough to have his toys after him! Our stalwart feline, Attila, was much happier last year when Ev began to feel better even though it meant more fur- grabbing!! Thanks for passing on the other items too!! We got a good laugh over the bumper stickers.
Ciao for now! Marianne From Sunny California for one day at least- another storm due in tomorrow! ========================================================================= Date: Sun, 18 Jan 1998 07:49:21 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> Organization: AOL (http://www.aol.com) Subject: Re: shots Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks to all who responed regarding Jordans shots. His mood is better today..still no talking. Joe seems to think hes gotten bored w/ it and is on to bigger and better things which require more concentration..hence he can't talk and play w/ his jungle gym toys at the same time. Who knows, but I don't like it one bit. Hes actng the same except for that..Like I said..he talked 24-7..imagine that knowing his mom!! and now its like the silent treatment. I guess it just happened to coincide w/ shots. But to me..paronoid mom..it seems hes trying to talk, but can't get anything out!! Again, my husband rolls his eyes and makes fun of me!! This is one time where I really do hope he's right!! But, as he did point out..Jordan talked to his stuffed dogs for 30 min. this morning before calling for us!! MAybe hes giving me the silent treatment!!!! ha!!ha!! So......
Also, I tried to look up the website for lactosorb and it didn't work..anyone else have any luck? Wnated to see our reconstructive guy w/ info. in hand..in the event I didn't expalin clearly enough..which apparently is a common thing for me to do at doctors visits!!
hope everyones having a nice weekend
Jenn..beautifully sunny and a mild 68 degrees.here in St. Pete, FL.:) :) :) :) :) ========================================================================= Date: Sun, 18 Jan 1998 11:46:35 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: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: No Subject Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Jenn, I went into the website for lactosorb last night. www.lorenzsurgical.com A couple of weeks ago I could not access internet. AOL had me download my 3.0 software and upgrade to their 3.0.1. Maybe that is your problem.
Take Care Gaylann, Blake's Grandmother Cordova, Tennessee (ice storm Friday and no power from 6 a.m til 1:30 p.m.) ========================================================================= Date: Sun, 18 Jan 1998 21:22:26 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dan and judy,
So glad to hear that Zach is doing well. It's must be great when they can actually talk and tell you where it hurts. Jonathan is getting ready for round 2 and this time we are not going home with just tylenol. Poor baby just wanted to be walked (not rocked or held while sitting down) "all" night long. He did do much better the second night but that first one was a doozy. Our surgeon said they will continue to take from the same incision as last time. How many incisions in the groin area do they usually end up with? I imagine it's something like my repeat c-section where they make a new incision real close to the first one and do a "sorta" tummy tuck. I can understand why so many parents chose not to do the toes. I can't imagine how they get so much skin for all the grafts. I didn't mean to go on so, just hope all continues to go well with Zach's healing.
Brenda Houston ========================================================================= Date: Sun, 18 Jan 1998 21:37:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robyn/Jenn,
The total vault that Jenn was asking about is not to change the shape of the back of their head. It actually lowers the heigth of the head by removing the entire skull and remodeling it (including any forehead advancements, etc.) Jonathan's head shape in the back has always been fairly round. The doc band was to see if it would help bring the forehead out and consequently it did round out the back "more" than it was and also smooth out the bumps from surgery. Sorry for not being clearer on this subject. It's a tricky surgery because it involves the back of the head.
Robyn, unfortunately I didn't get near the scanner info this weekend. George was working and Jonathan is at that stage where you have to watch him constantly. He is all over the place and trying so hard to walk. He even took his first spill and has a nice blue bruise on his cheek. I was no less that 6 inches away and still didn't catch him. They are sooo fast. Anyway, it's on the top of my list whenever we get a day when we're both off. Hope all is going well with the insurance "stuff".
Brenda ========================================================================= Date: Sun, 18 Jan 1998 21:57:07 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Intro Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome!
I know what you mean about getting the info together for Teeter's Page. This has been on my agenda for almost a year now too.
The Siebert family ========================================================================= Date: Sun, 18 Jan 1998 22:02:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Introduction to list Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Foster family,
Our son Jonathan had the same surgery last May (he was 6 months old). It went very well and he bounced back in a very short time. The incision and swollen eyes are probably the biggest thing to get used to seeing initially but they heal quickly. Best of luck.
Brenda Siebert Houston ========================================================================= Date: Sun, 18 Jan 1998 22:14:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Teeter's Page counter Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Subj: Teeter's Page Date: 01/05/98 To: CatNDon@apert.org , , ,
Don,
I sent some pictures and an update several months ago but I guess they were misplaced or maybe not received. Anyway, we got a scanner for Christmas and I'd like to send you a chronology of pictures of the last year of Jonathan. I don't have the mechanics worked out yet but was just wondering if you had any suggestions or if this is something we can do ourselves to save you some time. I'm not a computer wiz by any means, but can follow directions most of the time. I'd really like to get Jonathan on Teeter's Page and his own web page since you gave us that wonderful gift. We have lot's of friends around the country that would like to see him online since they can't in person. Please let me know what would be the best for you and how to proceed. What exactly do I need to send you or do?
Best regards for a great new year!
Brenda Siebert
P.s. Don- This mail was returned to me. I also sent a note to your work email and it was returned with "unable to deliver mail due to mailbag contention". I have no idea what that means. Am I doing something wrong? Please let me know if you get this as I've tried every way I know how. ========================================================================= Date: Sun, 18 Jan 1998 23:09:55 -0400 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: Kerri Hedinger <khedinger@NS.GEMLINK.COM> Subject: Introduction MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0019_01BD2466.3286C880"
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------=_NextPart_000_0019_01BD2466.3286C880 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
Hello to all! My name is Kerri Hedinger from Orange, VA. I am a single mother of = three very beautiful children-Tyler (8 yrs. old), Erin (7 yrs. old) and = Devin (9 months old). I am new to the internet and have enjoyed reading = Teeter's Page. My youngest son was born with Apert Syndrome and our = lives have changed so much. =20
Early during my pregnancy, I was diagonsed with polyhydramnios. After a = Amnio., structure sonograms and routine sonograms the specialist's said = that my baby was perfectly normal except that he may have a swollowing = obstruction that could not be prediagnosed. Needless to say I and the = doctors were quite surprised when Devin was born. He was born in a = small hospital and sent only hours after to a larger hospital where he = was diagnosed. Luckily his vitals were stable and have remained since.
Devin had a Craniectomy at 5 wks. of age. (A surgery gone amuck!!) I = was very fortunate to have contact with 2 other families with Apert's = children early in the game so I got some referals to Dr. Larry Sargent = in Chattanooga, TN. We had A shunt placement in August 1997. His hand = surgery had to be postponed because of the Shunt. We are scheduled for = a vault reshaping Feb. 5th and as soon as he is released we will be on = our way to Greenville, SC for his thumb and pinkie release. =20
Devin has been a joy to us. He is the source of our strenght to make it = through everything he must endevour. No matter how bad things seem to = us, he's always got that big beautiful smile on!!
I have heard something about some type of new fixtures called Lacto = something. Could someone fill me in? Also, there was a baby born in = Springfield, VA with Apert's. Has anyone heard from or have any info.? = Springfield is only 1 hr. from where we live and I thought I could = contact the parents if they'd like.
Thank's=20 Kerri
------=_NextPart_000_0019_01BD2466.3286C880 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello to all!</FONT></DIV> <DIV><FONT size=3D2>My name is Kerri Hedinger from Orange, VA. I = am a single=20 mother of three very beautiful children-Tyler (8 yrs. old), Erin (7 yrs. = old)=20 and Devin (9 months old). I am new to the internet and have = enjoyed=20 reading Teeter's Page. My youngest son was born with Apert = Syndrome and=20 our lives have changed so much. </FONT></DIV> <DIV> </DIV> <DIV><FONT size=3D2>Early during my pregnancy, I was diagonsed with=20 polyhydramnios. After a Amnio., structure sonograms and routine = sonograms=20 the specialist's said that my baby was perfectly normal except that he = may have=20 a swollowing obstruction that could not be prediagnosed. Needless = to say I=20 and the doctors were quite surprised when Devin was born. He was = born in a=20 small hospital and sent only hours after to a larger hospital where he = was=20 diagnosed. Luckily his vitals were stable and have remained=20 since.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Devin had a Craniectomy at 5 wks. of age. (A surgery = gone=20 amuck!!) I was very fortunate to have contact with 2 other = families with=20 Apert's children early in the game so I got some referals to Dr. Larry = Sargent=20 in Chattanooga, TN. We had A shunt placement in August 1997. = His=20 hand surgery had to be postponed because of the Shunt. We are = scheduled=20 for a vault reshaping Feb. 5th and as soon as he is released we will be = on our=20 way to Greenville, SC for his thumb and pinkie release. = </FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Devin has been a joy to us. He is the source = of our=20 strenght to make it through everything he must endevour. No matter = how bad=20 things seem to us, he's always got that big beautiful smile = on!!</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>I have heard something about some type of new = fixtures called=20 Lacto something. Could someone fill me in? Also, there was a = baby=20 born in Springfield, VA with Apert's. Has anyone heard from = or have=20 any info.? Springfield is only 1 hr. from where we live and I = thought I=20 could contact the parents if they'd like.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Thank's </FONT></DIV> <DIV><FONT size=3D2>Kerri</FONT></DIV></BODY></HTML>
------=_NextPart_000_0019_01BD2466.3286C880-- ========================================================================= Date: Mon, 19 Jan 1998 04:54:18 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Teeter's Page Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-18 22:16:04 EST, you write:
<< I'd really like to get Jonathan on Teeter's Page and his own web page since you gave us that wonderful gift. We have lot's of friends around the country that would like to see him online since they can't in person. >> Don- add me in. I had planned to do this before I started back to work after our move but...alas. I must get Evan on as I'll never be able to keep all the Pittsburgh folks updated any other way. Let us know what you need also. Don't have a scanner yet- do color copies scan well??
Marianne ========================================================================= Date: Mon, 19 Jan 1998 08:00:37 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Fwd: FW: An Interesting Story -Forwarded Comments: To: Michellefields@hotmail.com, Nolph@hotmail.com, Valdezman@aol.com, Cheeseman@aol.com, KatieMcg@erols.com, Edwin.M.Shipp@Exxon.com Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_885214837_boundary"
This is a multi-part message in MIME format.
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Thought this might add something to everyones day!!
Jenn
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From: Jo5555 <Jo5555@aol.com> Return-path: <Jo5555@aol.com> To: Jenngram@aol.com Subject: Fwd: FW: An Interesting Story -Forwarded Date: Sun, 18 Jan 1998 17:36:43 EST Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part1_885214837_boundary"
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From: Zensu0 <Zensu0@aol.com> Return-path: <Zensu0@aol.com> To: Jo5555@aol.com Subject: Fwd: FW: An Interesting Story -Forwarded Date: Sun, 18 Jan 1998 11:41:09 EST Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part2_885214837_boundary"
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:)
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From: Anathea <Anathea@aol.com> Return-path: <Anathea@aol.com> To: Zensu0@aol.com, MarblLess@aol.com, WldStwbry@aol.com, EgadsMary1@aol.com, Sawsone@aol.com, Hatlast@aol.com, BillieMom1@aol.com, WindsDan@aol.com, WrthItIam@aol.com, JoBeGood@aol.com, TenaAnn@aol.com, KDbanana@aol.com, KITTY00130@aol.com, Nomoabuse@aol.com Subject: Fwd: FW: An Interesting Story -Forwarded Date: Sun, 18 Jan 1998 11:30:53 EST Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part3_885214837_boundary"
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You gotta scroll down to get to the story, but it is well worth reading....if I have sent this to you already, then read it again ; )
Anathea ; )
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Return-Path: <HELIXNEALA@Aol.Com> Received: from relay20.mail.aol.com (relay20.mail.aol.com [172.31.106.66]) by air26.mail.aol.com (v37.8) with SMTP; Tue, 30 Dec 1997 10:14:57 -0500 Received: from imo16.mx.aol.com (imo16.mx.aol.com [198.81.19.172]) by relay20.mail.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id KAA28595 for <papoo1025@aol.com>; Tue, 30 Dec 1997 10:10:44 -0500 (EST) From: HELIXNEALA <HELIXNEALA@Aol.Com> Message-ID: <3ee60aad.34a90e41@aol.com> Date: Tue, 30 Dec 1997 10:07:42 EST To: wdblevin@execpc.com, eric_schudy@rens.com, joel.scher@cna.com, DASHRLKA@Aol.Com, Simontov@Aol.Com, dedaelus@mindspring.com, nadav.cassuto@ccmail.fingerhut.com, reijo@xnet.com, DDFlink@Aol.Com, zakmarle@flash.net, tlau@uiuc.edu, d-reiffman@usa.net ( David Reiffman ), cmell@sheddaquarium.org, papoo1025@Aol.Com ( anshel ), Rosychik@Aol.Com, eboyars@hotmail.com ( Ephraim Boyarsky) Subject: Fwd: FW: An Interesting Story -Forwarded Organization: AOL (http://www.aol.com) X-Mailer: Inet_Mail_Out (IMOv11) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part4_885214837_boundary"
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Enjoy!
______________________________ Forward Header __________________________________ Subject: FW: An Interesting Story -Forwarded Author: Debbie Goode at OPR Date: 12/24/97 8:22 AM
When it gets less busy you can read this one!!!!
>> Thought you all might enjoy this. It is kind of long, but please read >> the entire story. >> >> Subject: Attitude is Everything >> >> ATTITUDE IS EVERYTHING.........By Francie Baltazar-Schwartz >> >> >> Jerry was the kind of guy you love to hate. He was always in a >> good mood and always had something positive to say. When someone would >> ask him how he was doing, he would reply, "If I were any better, I >> would be twins!" >> >> He was a unique manager because he had several waiters who had >> followed him around from restaurant to restaurant. The reason the >> waiters followed Jerry was because of his attitude. He was a natural >> motivator. If an employee was having a bad day, Jerry was there >> telling the employee how to look on the positive side of the >> situation. >> >> Seeing this style really made me curious, so one day I went up to >> Jerry and asked him, "I don't get it! You can't be a positive person >> all of the time. How do you do it?" Jerry replied, "Each morning I >> wake up and say to myself, Jerry, you have two choices today. You can >> choose to be in a good mood or you can choose to be in a bad mood.' >> I choose to be in a good mood. Each time something bad happens, I can >> choose to be a victim or I can choose to learn from it. I choose to >> learn from it. Every time someone comes to me complaining, I can >> choose to accept their complaining or I can point out the positive >> side of life. I choose the positive side of life." "Yeah, right, it's >> not that easy," I protested. >> >> "Yes it is," Jerry said. "Life is all about choices. When you cut >> away all the junk, every situation is a choice. You choose how you >> react to situations. You choose how people will affect your mood. You >> choose to be in a good mood or bad mood. The bottom line: It's your >> choice how you live life." >> >> I reflected on what Jerry said. Soon thereafter, I left the >> restaurant industry to start my own business. We lost touch, but I >> often thought about him when I made a choice about life instead of >> reacting to it. Several years later, I heard that Jerry did something >> you are never supposed to do in a restaurant business: he left the >> back door open one morning and was held up at gunpoint by three armed >> robbers. While trying to open the safe, his hand, shaking from >> nervousness, slipped off the combination. The robbers panicked and >> shot him. Luckily, Jerry was found relatively quickly and rushed to >> the local trauma center. After 18 hours of surgery and weeks of >> intensive care, Jerry was released from the hospital with fragments of >> the bullets still in his body. I saw Jerry about six months after the >> accident. >> >> When I asked him how he was, he replied, "If I were any better, >> I'd be twins. Wanna see my scars?" >> >> I declined to see his wounds, but did ask him what had gone >> through his mind as the robbery took place. "The first thing that went >> through my mind was that I should have locked the back door," Jerry >> replied. "Then, as I lay on the floor, I remembered that I had two >> choices: I could choose to live, or I could choose to die. I chose to >> live." >> >> "Weren't you scared? Did you lose consciousness?" I asked. Jerry >> continued, "The paramedics were great. They kept telling me I was >> going to be fine. But when they wheeled me into the emergency room and >> I saw the expressions on the faces of the doctors and nurses, I got >> really scared. In their eyes, I read, 'He's a dead man. " I knew I >> needed to take action." "What did you do?" I asked. >> >> "Well, there was a big, burly nurse shouting questions at me," >> said Jerry. "She asked if I was allergic to anything. 'Yes,' I >> replied. The doctors and nurses stopped working as they waited for my >> reply. I took a deep breath and yelled, 'Bullets!' Over their >> laughter, I told them, 'I am choosing to live. Operate on me as if I >> am alive, not dead." >> >> Jerry lived thanks to the skill of his doctors, but also because >> of his amazing attitude. I learned from him that every day we have the >> choice to live fully. Attitude, after all, is everything. >> >> You have 2 choices now: >> >> 1. Save or delete this mail from your mail box. >> 2. Forward it to your friends and choose to pass this on. >> >> Hope, you will choose choice 2. >> >> "The road to success is always under construction." >> -- Arnold >> > >
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--part0_885214837_boundary-- ========================================================================= Date: Mon, 19 Jan 1998 08:22:06 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> Organization: AOL (http://www.aol.com) Subject: Re: Introduction Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Kerri,
Welcome to the list. I think you will find this a great resource as well as a place to just voice your thoughts and fears. Hope the vault goes well..as the hand surgery. My little boy, Jordan (our only one), is 4 mos. (and growing like a weed I might add..hes already up to 15 lbs from the 6 lbs he was at birth!!!) and will ahve his craniotomy and orbital advancement on 2-10-98...Hand surgeries to follow..Like Devin his vitals were ok and continue to be..knock on wood..cross my fingers and all that good stuff!! As there is not a day that goes by that I take advantage of it..or don't worry about it.
Hope all continues to go well..I have heard wonderful things about Dr. Seargant, actually spoke w/ his nurse, who was equally as wonderful. You are in great hands.
welcome to the list!!!
Jenn (St. Petersburg, FL) ========================================================================= Date: Mon, 19 Jan 1998 10:06:14 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: I need your advice. Comments: To: "Kohner, Kristin" <KKohner@sowashco.k12.mn.us> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
Hi Kristin -
How old is your student? Many Apert kids have delayed speech. I personally agree with you that traditional signing for Apert kids just places another obstacle in their path. I know several of the parents on our page have successfully used communication boards. Personally, Teeter was delayed but then suddenly started talking and has not stopped since.
The best way to get answers from our group is to post your letter to the listserv, which I will do now. OK parents, tell Kristan what works - please reply directly to KKohner@sowashco.k12.mn.us and send a cc to CatNDon@apert.org - once again thanks for your help. Let's help Kristan get one more kid on the right track!
Don
---------- From: Kohner, Kristin[SMTP:KKohner@sowashco.k12.mn.us] Sent: Monday, January 19, 1998 9:20 AM To: 'CatNDon@apert.org' Subject: I need your advice.
My name is Kristin Kohner, and I am a Teacher of the Deaf/Hard of Hearing. I have been working with a student with Apert Syndrome for approximately 6 months. He has a mild hearing loss, and he suffers from chronic ear infections. He does not use any voicing for communication. For the past 3 years, a Teacher of the Deaf/Hard of Hearing (TDHH) has been working with him teaching signs. He understands signs receptively and responds to certain signs. However, due to his limited ability in producing these signs, I have been questioning the communication teaching strategy. I have started using pictures paired with signs and voicing. The teachers have been pairing the pictures with the real object, and we are hoping that he will eventually learn the abstract picture has meaning. Our goal is to get him to point to the picture to make choices and eventually use this for augmentative communication. I would like to know what other parents and educators have done to facilitate the communication process. Please let me know what others have done. Thanks for your help! ========================================================================= Date: Mon, 19 Jan 1998 12:23:46 -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: wrong email address MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
A week or so ago, I gave Nicholas' teachers email address on here and just found out ti was wrong.. so, Cindy or anyone else trying to email her, I am sorry for any problems. The correct address is Sandy Turner Balistk2@aol.com
Carol Graves ========================================================================= Date: Mon, 19 Jan 1998 12:00:35 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Introduction MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Kerri,
Glad to see you on the list. I haven't heard from any families from Springfield, VA but I do have a few in Virginia (although only one is listed to network). If you would like to be added to the networking list, please send back the questionnaire I mailed to you or e-mail me privately to give the information I need. Did you move? I noticed you mentioned a different city than I have for you.
Hope all is well.
Christine
Kerri Hedinger wrote: > > Hello to all! > My name is Kerri Hedinger from Orange, VA. I am a single mother of three very beautiful children-Tyler (8 yrs. old), Erin (7 yrs. old) and Devin (9 months old > > Early during my pregnancy, I was diagonsed with polyhydramnios. After a Amnio., structure sonograms and routine sonograms the specialist's said that my baby w > > Devin had a Craniectomy at 5 wks. of age. (A surgery gone amuck!!) I was very fortunate to have contact with 2 other families with Apert's children early in t > > Devin has been a joy to us. He is the source of our strenght to make it through everything he must endevour. No matter how bad things seem to us, he's always > > I have heard something about some type of new fixtures called Lacto something. Could someone fill me in? Also, there was a baby born in Springfield, VA with > > Thank's > Kerri > > --------------------------------------------------------------- > Hello to all! > My name is Kerri Hedinger from Orange, VA. I am a single mother of > three very beautiful children-Tyler (8 yrs. old), Erin (7 yrs. old) > and Devin (9 months old). I am new to the internet and have enjoyed > reading Teeter's Page. My youngest son was born with Apert Syndrome > and our lives have changed so much. > > Early during my pregnancy, I was diagonsed with polyhydramnios. After > a Amnio., structure sonograms and routine sonograms the specialist's > said that my baby was perfectly normal except that he may have a > swollowing obstruction that could not be prediagnosed. Needless to > say I and the doctors were quite surprised when Devin was born. He > was born in a small hospital and sent only hours after to a larger > hospital where he was diagnosed. Luckily his vitals were stable and > have remained since. > > Devin had a Craniectomy at 5 wks. of age. (A surgery gone amuck!!) I > was very fortunate to have contact with 2 other families with Apert's > children early in the game so I got some referals to Dr. Larry Sargent > in Chattanooga, TN. We had A shunt placement in August 1997. His > hand surgery had to be postponed because of the Shunt. We are > scheduled for a vault reshaping Feb. 5th and as soon as he is released > we will be on our way to Greenville, SC for his thumb and pinkie > release. > > Devin has been a joy to us. He is the source of our strenght to make > it through everything he must endevour. No matter how bad things seem > to us, he's always got that big beautiful smile on!! > > I have heard something about some type of new fixtures called Lacto > something. Could someone fill me in? Also, there was a baby born in > Springfield, VA with Apert's. Has anyone heard from or have any > info.? Springfield is only 1 hr. from where we live and I thought I > could contact the parents if they'd like. > > Thank's > Kerri ========================================================================= Date: Mon, 19 Jan 1998 15:06:57 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Introduction Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello and welcome, Kerri, Devin and family,
My name is Janine and my daughter Emily is 5 and a half months old with Apert. We also have a son, Nicholas, 3 and a half years old. Emily has had two surgeries already and is doing well.
Good luck with Devin's surgery and I am sure you will find this list and supportive and helpful as I have.
Janine (New York) ========================================================================= Date: Mon, 19 Jan 1998 15:12:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Eyes - Glasses Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello all:
We just came back from Emily's opthalmologist appt. this morning, which was a very long appt. Anyway, the eye dr. told us that her optic nerve is very strong, which is a good thing. He also said that she is farsighted and will need to get glasses. Since this is a subject that has been talked about recently, how do you get your 6 month old to wear the instead of chewing on them, which I am sure she will do. She's too young to use the computer bribery, which is working on your older kids. I'm sure they have some type of band that goes around her head, right?
As far as strabismus goes, he said she has it very little, just that we need to keep an "eye" on it (cute, huh?) and that maybe the glasses will strengthen that also. He said if she requires surgery it will be about 1 year of age. Sound right?
Anyway, have to now go schedule that appt.
Also, there was talk about the back of their heads being flat, Emily's is flat also, but that's because one side of the lambdoid is fused also. In fact, she has to go for another set of x-rays to see the status of that, whether that will be needing surgery soon or not. They're watching that as she grows to see.
Hope all is well with everyone.
Janine ========================================================================= Date: Mon, 19 Jan 1998 15:54:44 -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 cr