Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Ruth, Hi there, welcome to you and your family. Just to let you know, my daughter didn't sit up til 14 months, and it was a long wait for it. She is still not walking (she is a backscooter til the end!), but I think she will when she is ready. I think our kids will just do stuff when they are good and ready! I find that Kennedy does new " things " in spurts, and then drops off for a while. Maybe he just needs a break after the big job of learning to sit up! Good luck with everything and I " m glad you found us. Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 We're new!!! From: ruth.braga@... My name is Ruth and my husband and I adopted a baby w/CHARGE 18 mos. ago when he was 1 week old. His name is brandon. I actually found out about this list from my friend , whom you probably know well as 's mom. She had subscribed to this list and was telling me about it and all the great info and messages that she got. She has been an incredible example to me of courage and strength and I know she got alot of her support from this list, so I've decided to follow in her footsteps. Our family will really miss ! was diagnosed right at birth and we barely knew what the syndrome was when we went to pick him up from the agency. He just finished his 9th hospital stay and 5th surgery. He has had issues w/swallowing since birth and now has a GT. He is severe/profound deaf but is responding well with hearing aides-despite us being told he is progressively getting worse. He just had heart surgery to close an ASD. He has colobomas in both eyes, but his vision seems to be relatively good. He is on a C-Pap machine to help his airway from obstructing when he sleeps. I would love to hear from anyone else who's child has been on this. I'm told it has helped him avoid being trached. My main concerns are his possibly deteriorating hearing and his development. He has just learned to sit up and I'm beginning to get a little depressed that he doens't have the ability to do things. He is also frustrated w/trying to communicate to us what his needs are. It is hard to describe what my frustrations are. I love him to death and I'm afraid that I'm missing something or I should be doing more to help him and I'm not. Maybe joining this list will help us. We are pretty upbeat and positive people, but every once in awhile I get really frustrated! But now you know a little about us and I look forward to getting messages from others! Ruth --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Ruth Welcome! My son does not have CHARGE, but has a lot of very similar issues. He is 7 yrs old. I noticed your utah.edu address.... I am also in education in UT- granite district. Nice to meet you! Jelena Salt Lake City UT Wife to Liam, Mom to Matt 16, Logan 7 (bilateral cleft lip and palate, partial ACC and SOD: ONH, partial panhypopit, SI disorder and hearing impaired?), Connor 3 and Duncan 17 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Ruth, Welcome to you, , and . Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Ruth, Why are they telling you his hearing will deteriorate. This is not necessarily the case. In fact some kids' hearing improves as they get bigger and their inner ears get bigger. Cheers, Marea Howe We're new!!! >From: ruth.braga@... > >My name is Ruth and my husband and I adopted a baby w/CHARGE 18 mos. ago when he was 1 week old. His name is brandon. >I actually found out about this list from my friend , whom you probably know well as 's mom. She had subscribed to this list and was telling me about it and all the great info and messages that she got. She has been an incredible example to me of courage and strength and I know she got alot of her support from this list, so I've decided to follow in her footsteps. Our family will really miss ! > was diagnosed right at birth and we barely knew what the syndrome was when we went to pick him up from the agency. He just finished his 9th hospital stay and 5th surgery. He has had issues w/swallowing since birth and now has a GT. He is severe/profound deaf but is responding well with hearing aides-despite us being told he is progressively getting worse. He just had heart surgery to close an ASD. He has colobomas in both eyes, but his vision seems to be relatively good. >He is on a C-Pap machine to help his airway from obstructing when he sleeps. I would love to hear from anyone else who's child has been on this. I'm told it has helped him avoid being trached. >My main concerns are his possibly deteriorating hearing and his development. He has just learned to sit up and I'm beginning to get a little depressed that he doens't have the ability to do things. He is also frustrated w/trying to communicate to us what his needs are. It is hard to describe what my frustrations are. I love him to death and I'm afraid that I'm missing something or I should be doing more to help him and I'm not. Maybe joining this list will help us. >We are pretty upbeat and positive people, but every once in awhile I get really frustrated! But now you know a little about us and I look forward to getting messages from others! > >Ruth > >>For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 RUTH My name is Mike Capozza our family is from Atlanta Ga. My oldest grandaughter diagnosis at birth was CHARGE she had Atresia Choanoe, Colobomas in both eyes her ears fold over just a little at the top she is also growth retarded. I can tell you she and I bonded at the hospital as she spent the first 45 days of her life in the hospital. She is with out a doubt THE LOVE OF MY LIFE. While in the hospital they told us she was deaf and blind. She now has hearing aids and glasses and is doing fine in school she is still not walking on her own but will walk any where you want to go as long as you hold her hand. Her special needs just brightens my life when I am around her the nice thing is my wife and I babysit every weekend for her and her brother who is 1 year old and fine. She is a true treasure!!!!!!!!!!!! Good Luck And God Bless. Mike > Re: We're new!!! > > From: toby.c@... (Toby Colp) > > ruth.braga@... wrote: > > > > From: ruth.braga@... > > > > My name is Ruth and my husband and I adopted a baby w/CHARGE 18 > mos. ago when he was 1 week old. His name is brandon. > > I actually found out about this list from my friend , whom you > probably know well as 's mom. She had subscribed to this list and > was telling me about it and all the great info and messages that she got. > She has been an incredible example to me of courage and strength and I > know she got alot of her support from this list, so I've decided to follow > in her footsteps. Our family will really miss ! > > was diagnosed right at birth and we barely knew what the > syndrome was when we went to pick him up from the agency. He just finished > his 9th hospital stay and 5th surgery. He has had issues w/swallowing > since birth and now has a GT. He is severe/profound deaf but is responding > well with hearing aides-despite us being told he is progressively getting > worse. He just had heart surgery to close an ASD. He has colobomas in both > eyes, but his vision seems to be relatively good. > > He is on a C-Pap machine to help his airway from obstructing when he > sleeps. I would love to hear from anyone else who's child has been on > this. I'm told it has helped him avoid being trached. > > My main concerns are his possibly deteriorating hearing and his > development. He has just learned to sit up and I'm beginning to get a > little depressed that he doens't have the ability to do things. He is also > frustrated w/trying to communicate to us what his needs are. It is hard to > describe what my frustrations are. I love him to death and I'm afraid that > I'm missing something or I should be doing more to help him and I'm not. > Maybe joining this list will help us. > > We are pretty upbeat and positive people, but every once in awhile I get > really frustrated! But now you know a little about us and I look forward > to getting messages from others! > > > > Ruth > > > > Ruth, > Welcome to the list! I always find it amazing that there are people > like you that find a place in your heart and lives for kids with special > needs. I find that I have up and down times of frustration and I guess > depression. It's funny though because just when you're ready to say, > " this will never happen " it does. It sounds like has every > chance in the world to develop and thrive. > > Jeanie Colp > mom to MacKenzie 18mos.CHARGE, Tyler 8, & Zachary 5 > > > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Mike Capozza wrote: > > > > RUTH > My name is Mike Capozza our family is from Atlanta Ga. My oldest > grandaughter diagnosis at birth was CHARGE she had Atresia Choanoe, > Colobomas in both eyes her ears fold over just a little at the top she is > also growth retarded. I can tell you she and I bonded at the hospital as > she spent the first 45 days of her life in the hospital. She is with out a > doubt THE LOVE OF MY LIFE. While in the hospital they told us she was deaf > and blind. She now has hearing aids and glasses and is doing fine in school > she is still not walking on her own but will walk any where you want to go > as long as you hold her hand. Her special needs just brightens my life when > I am around her the nice thing is my wife and I babysit every weekend for > her and her brother who is 1 year old and fine. She is a true > treasure!!!!!!!!!!!! > > Good Luck And God Bless. > Mike MIKE, Wow, you babysit every weekend. You're my kind of grandpa!!! My daughter's favourite person in the world is my father so I can relate. Jeanie Colp mom to MacKenzie 18mos.CHARGE Quote Link to comment Share on other sites More sharing options...
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