Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 , Here's Marks profile: 15yrs old bd 9-21-83 tracheoesophageal fistula colabomas with retinal involvement in right both eyes do have some form of colaboma heart defect ASD and large PDA duodenal stenosis cleft lip hernia, undescended testicles, micropenis g tube placement for 11 years hiatal hernia repair (still eats soft-ground diet, due to esphageal surgery and poor bite development) radail dysplasia of both hands- surgically corrected one slightly cupped ear, PE tubes hearing loss moderate in right, severe in left NO VERBAL SKILLS to date , some signing which is improving. I might have left something out because I typed from memory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 , will be 7 on 5/7. He has a fraternal twin brother. He was not diagnosed with CHARGE until he was 1 1/2 years old (about 2 weeks AFTER the St. Louis CHARGE conference)! We had spent that 1 1/2 getting blind sided with constant problems. When he was born it was apparent that 's heart had not formed properly. He was transported to a Boston hospital just hours after birth. We thought that he just had a heart defect. At about 1 week old several doctors told us that 's brain was malformed but that since he was so young it was hard to tell and they would repeat the MRI at 6 months. At 5 months it became apparent that the he needed more heart surgery. He wasn't growing and was tiny compared to his healthy twin brother. A doctor suggested to me (without my husband present) that I should reconsider the heart surgery if 's MRI came back showing him to be *neurologically devasted*. I was shocked and was real proud of myself for being able to tell this doctor that that was a decision to be made by my husband, myself, and our parish priest! The MRI came back within normal limits (altho, there are some anomalies). The heart surgery made a ton of difference for , weight-wise. He is still small for his age. (I have a daycare child who is 3 1/2 and is about the same size as he is.) has colobomas on the optic nerve and we have just found out that he only has one *large* blind spot in his right eye, and he compensates well. Any other blind spots are obviously quite small. He is also nearsighted for which he wears glasses. 's hearing is mild/moderate in the right, and moderate to severe in the left. He wears aids in both ears, altho there are times when he doesn't want to wear them, and he does pretty well. We were fortunate that does not have kidney reflux even tho an ultrasound showed that his kidneys are not the same size, one is smaller than the other and gets Speech and OT at a rehab hospital as well as at school. He gets his PT thru taking Tae Kwon Do (martial arts) and also at school. Janet Wife to Matt Mom to & (CHaRGEr) 7 on 5/7, nne 2, and Mom to 10 months, and 19 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 , Thanks for responding. I appreciate the information. I did want to ask you, you said Mark has some signing, which is improving. What types of programs are you using. Does he go to a school for hearing impaired? I have some programs you can get information on and work with him at home. You could probably have the school purchase them for you and make copies of them. Aubree's school does this for me. Thanks, Wells Skeeter - Husband Aubree 14 Years (charge) Rhoni 16 Years ---------- > From: Kav810@... > To: CHARGEonelist > Subject: Re: CHARGE > Date: Tuesday, April 06, 1999 9:00 AM > > From: Kav810@... > > , > Here's Marks profile: 15yrs old bd 9-21-83 > > tracheoesophageal fistula > > colabomas with retinal involvement in right both eyes do have some form of > colaboma > > heart defect ASD and large PDA > > duodenal stenosis > > cleft lip > > hernia, undescended testicles, micropenis > > g tube placement for 11 years > > hiatal hernia repair (still eats soft-ground diet, due to esphageal surgery > and poor bite development) > > radail dysplasia of both hands- surgically corrected > > one slightly cupped ear, PE tubes hearing loss moderate in right, severe in > left > > NO VERBAL SKILLS to date , some signing which is improving. > I might have left something out because I typed from memory > > ------------------------------------------------------------------------ > Start a new hobby. Meet a new friend. > http://www.onelist.com > Onelist: The leading provider of free email list services > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > 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 April 6, 1999 Report Share Posted April 6, 1999 Janet, Aubree was extremely small before she had her 1st heart surgery. At first she seemed to be gaining a lot of weight. Within 3 months she gained 20 lbs. She didn't grow in height much at first and started looking very healthy. She had always been so skinny and fragile. Then all of a sudden we could not believe the difference. I commented to her heart surgeron that he not only fixed her heart, but she was putting on weight and her eye sight was getting better. He said he would love to take credit for the eyes, but he doubted it. Aubree's eye doctor told me that as they get older you will see her eyes get better. And I believe it. Aubree has had 2 other heart surgeries. She is now at 68 lbs and about 4 feet tall. She is thin, but she looks very healthy. Thanks for your help in my own research. Wells Skeeter - Husband Aubree 14 Years (Charge) Rhoni 16 Years ---------- > From: JPM4189@... > To: CHARGEonelist > Subject: Re: CHARGE > Date: Tuesday, April 06, 1999 11:02 AM > > From: JPM4189@... > > , > > will be 7 on 5/7. He has a fraternal twin brother. He was not > diagnosed with CHARGE until he was 1 1/2 years old (about 2 weeks AFTER the > St. Louis CHARGE conference)! We had spent that 1 1/2 getting blind sided > with constant problems. When he was born it was apparent that 's heart > had not formed properly. He was transported to a Boston hospital just hours > after birth. We thought that he just had a heart defect. > > At about 1 week old several doctors told us that 's brain was malformed > but that since he was so young it was hard to tell and they would repeat the > MRI at 6 months. At 5 months it became apparent that the he needed more > heart surgery. He wasn't growing and was tiny compared to his healthy twin > brother. A doctor suggested to me (without my husband present) that I should > reconsider the heart surgery if 's MRI came back showing him to be > *neurologically devasted*. I was shocked and was real proud of myself for > being able to tell this doctor that that was a decision to be made by my > husband, myself, and our parish priest! The MRI came back within normal > limits (altho, there are some anomalies). > > The heart surgery made a ton of difference for , weight-wise. He is > still small for his age. (I have a daycare child who is 3 1/2 and is > about the same size as he is.) > > has colobomas on the optic nerve and we have just found out that he > only has one *large* blind spot in his right eye, and he compensates well. > Any other blind spots are obviously quite small. > He is also nearsighted for which he wears glasses. > > 's hearing is mild/moderate in the right, and moderate to severe in the > left. He wears aids in both ears, altho there are times when he doesn't want > to wear them, and he does pretty well. > > We were fortunate that does not have kidney reflux even tho an > ultrasound showed that his kidneys are not the same size, one is smaller than > the other and > > gets Speech and OT at a rehab hospital as well as at school. He gets > his PT thru taking Tae Kwon Do (martial arts) and also at school. > > Janet > Wife to Matt > Mom to & (CHaRGEr) 7 on 5/7, nne 2, and > Mom to 10 months, and 19 months. > > Weymouth, Massachusetts > > > ------------------------------------------------------------------------ > Is ONElist important to you? Has it changed your life? > http://www.onelist.com > Come visit our new web site and share with us your stories > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > 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...
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