Our third child, Johnathon was born on July 13.1999 with a rare syndrome called Cerebro-costo-mandibular syndrome. He
was born at Foothills Hospital in Calgary, Alberta then transferred to their NICU. He had a number of malformations including
cleft palate(fixed),micrognathia,rib abnormalies,undescended right testicle(fixed)and a hyposadias(fixed). He also has a bell
shaped thorax. He was transferred to Alberta Children's Hospital when he was 7 days old for a sleep study but the stay was
prolonged due to feeding problems and oxygen. We had another son (Brandon-Lee)that had the same syndrome but he passed away
of respiratory insufficiency secondary to CCM syndrome at the age of 16 weeks. In all the ultra sounds that i had, one at
16 weeks and other at 34 weeks showed everything was normal with all 3 pregnanies but after birth with chest xrays it was
confirmed he and his brother had rib anormalies. He had a NG tube until he was nine months old then he got a G-tube and a
fundoplication. When he was 16 months old he had the cleft palate, right testicle removed and hyposadias fixed. Once the repair
the jaw(when he's a teenager)he wont have a problem no more with sleep apnea. He has had numerous ear tube replacements and
numerous operations. On Nov.2004,he had 18 teeth pulled which left his 4 eye teeth. That was due to having a small jaw and
a cleft palate. Then on Jan.2006,he had his top 2 eye teeth capped and his bottom 2 eye teeth pulled. that left him with 2
of his new adult teeth. Now he has 5 teeth and he amazes me what he eats. As of Nov.2004, he is also on ventolin 4 times a
day to keep his lungs open. With the shape of his ribs, his lungs and heart are smaller than usual. He has been to the hospital
so much, he calls it his hospital and loves going there. We had Home Intervention (alot of therapists came in to help him
with motor and speech skills)come in when Johnathon was smaller until he was 2 and then he went to Providence where he had
speech and language,occupationaland physiotherapists until he finished kindergarden and did very well. Now he is doing very
well and is now attending Grade 1 in St. Bernadette School and is loving it. He has a afternoon aid to watch him on the playground,
lunch time and in the classroom in the afternoon. Teachers said he is the class clown and everyone seems to get along with
him so well. Johnathon's personality suits him and he loves helping his dad work on vehicles, ride his bike, his pedal car,helping
mom in the kitchen and best of all bugging his older sister Chelsea. Chelsea is normal but on her right hand, her pinky is
slanted a bit off to the side. They dont know if she has the gene in her but the Genetics said won't be able to tell until
she has kids. But other than that she'smy little helper with her brother and one great big sister. We have both of them in
the same school which helps alot. For a few months, if the teachers couldn't understand him, they called her to the classroom
to ask what he wanted. But he's doing so well, so a big thanks to all his doctors, specialists and the Alberta Children's
Hospital. He's one happy boy and loves to live his life to the fullest.
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