Guest guest Posted October 24, 1998 Report Share Posted October 24, 1998 , I read your comments about teething. Jack is now 15 1/2mths and has no teeth yet and is showing absolutely NO signs of teething.I've heard that this is quite common with CHARGErs so I'm not worrying yet. Jack still won't bring toys etc to his mouth and is still defensive about letting me have a good look in his mouth but his gums don't even look as they're ready to pop a tooth. Elaine mum to Elise (6yrs) & Jack(15 1/2mth)CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1998 Report Share Posted December 3, 1998 Michele wrote: I am reading the book When Bad Things Happen To Good People. Have any of you read it? I have loved it! I plan to reread it to think it all through again. Another thing I'm struggling with is trying to understand why she can't use her body the way the rest of us do. I just can't get it. I still get angry wondering why she can't just do what she's supposed to. Why is it so hard? Why are her muscles so weak? Why do her joints extend so far? How is it all related to CHARGE? I keep thinking that all she really has now is a vision impairment (only in one eye so not a huge deal) and a feeding problem which she is overcoming. So where do the physical limitations come from? It seems like more than the delay from her hospitalizations and early illness. Can that be all it is and she'll truly catch up? Or will she always be behind and different than other kids her age? I just can't come to terms with it. How did you guys accept and understand? Hi Michele! I read " When Bad Things Happen to Good People " 13 years ago when my mother died-it helped then and when was born, I already knew that bad things happen. I think that there are many issues and that these differ to some extent between kids. There are surgeries, hospitalizations, illnesses, hearing impairment, vision impairment, cardiac issues, sleep problems, and balance issues to name a few! I think that balance factors into this alot. is being evaluated by the vestibular lab at the Univ of Mich on Monday. We hope that the therapies prescribed as a result of the evaluation will help him with his ongoing balance problems. I try not to compare with other children his own age-that is NOT fair. If we are going to compare our CHARGE children, I think that it is best to limit comparisons to with other CHARGE children because at least they are on the same playing field! Even at a meeting the other night for parents of hearing impaired children, it was hard because has so many other issues. I found myself fighting back the tears and praying that could have enough language and understanding some day to use some of the assistive devices which were demonstrated-the technology was amazing. Within the CHARGE " family " each of our kids have different strengths and weaknesses, but a lot more in common than with nonCHARGErs. Congratulations on Aubrie's eating successes! Cheryl, , (5), (3, CHaRGE) Who agree that CHARGEland is a nice place that we never wanted to be. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1998 Report Share Posted December 4, 1998 Cheryl- Thanks for sharing your opinion. It helps so much to know how others feel. I realize that I am not alone and I learn new ways of looking at things. I went to 's school program today. He is in 1st grade. Last year, at his first school program, Aubrie was just a few weeks old and still in the hospital I think. It was so hard to be there and I cried thinking that she may never be up there singing with her peers. This year it was still sad in some ways, but it felt good to know that she *will* be there someday participating just as he did. And next year she'll be old enough to enjoy watching her big brother. Again, thanks for your response. Michele mom to Aubrie (1 yr) CHargE and (7 yrs) IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 At 06:27 AM 22/01/99 PST, you wrote: > >I already have on my PC a 2 page summary >of my child. 1 page is a list of each problem, the specialist who >follows her, last appt, next appt and how each dr is treating the >problem. It's very organized. The 2nd page is each hospitalization in >chronological order. The dates, the cause and the treatment given. >Drs. always say " Thank you " they take it put it in her file then ask me >all the questions for the complete medical history anyway. They write >and write and when they're done they can't read their writing anyway. >I've spoken with the patient advocate at the hospital (also a spec needs >mom) and she has the same problem. She's trying to get through to the >docs that this is ridiculous. > >Jeanne Jeanne WOW!! How organised is that? I am sooo jealous. I start off good but the chaos seems to take over, and win in the end. I guess that's how I am destined to remain. I can't even keep all of my bills in the right (and one) place!! Tiena Mum to Mikaela (11), Cady (CHaRgE 9 tomorrow) and Paige (7)and Wife to Arron (yes, he was home for dinner last night) Brisbane, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Jeanne, I was just reading about the school you had hope to take Caitlyn, and I was wondering about IE. Can't they guide you. KK's IE is the ones who found what district we were in and what is the best options for KK. She'll be starting on the 8th of next month. They don't require KK to be potty trained, in fact there were two options for KK. A developmentally delayed class, or a medical challenged class. The administrator though the medical class would be better for her. I have some of the same worries. Not sure if being with others will help or not help her, she isn't potty trained, can't eat on her own, most of the time. She also signs the easy simple words like more... and so on. They will keep that up and try to teach more if needed. Anyways what I wanted to say is can't the people at IE help you in this dept.? Just a suggestion. Korey mom to KK ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Michele, I agree with signing also. I always heard that signing was easier for children to learn than talking. Especially if they can't hear very good. We tryed and tryed to teach KK words. We got no where. As soon as we were taught to sign, no kidding that next week her first word for signing was.... " more " . But we kept at it all day and night. She picked up the rest fairly easy. She still doesn't talk much, mostly signing. I can't imagine not being able to talk with KK. It's worth a try, just keep at it, it may look like your not getting anywhere, but you really are. Out of the blue, KK just asked for " more " juice. I thought that I was getting no where and that we might as well forget teaching her. But really show the signing motion and try to show her what you mean. It will work out and you'll be so happy. Korey mom to KK ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 First of all, Caitlyn's only hand anomaly is a single palar crease, the docs like to call it a Simian (monkey) crease. Secondly, --I have watched many babies who were not even conceived at the time Caitlyn was born, heck, kids who were not even conceived when Caitlyn was a year old, do many, many things that Caitlyn cannot do and may not do for a long time. Let's see, kids who are 13 mos old were conceived when Caitlyn was almost 2 years old and they are now running, parallel playing, stacking blocks, manipulating fine motor toys, AND they have much more hair than Caitlyn!!! This is part of the pain we experience as a spec needs mom, I just had to get used to biting my lip! As a word of comfort to me, Caitlyn can do many things that kids her age cannot do, Caitlyn can say her name, address, phone number, AND her Pledge of Allegiance. She can memorize anything in a day or 2. Yay Caitlyn! As Jillian gets older, you will see her strengths and personality, and you will be able to focus on them. Although it always remains hard to see other kids. Jeanne Quote Link to comment Share on other sites More sharing options...
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