Join Date: Mar 2004
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Originally Posted by txmama
Hi all! So glad to have found this board. I've been struggling lately to find other moms with special needs kids. I've got lots of friends with kids that are really sweet and supportive but they really don't know what it is like and have a hard time relating.
My son doesn't really have a diagnosis yet. He was born by emergency c-section at 34 weeks due to lack of movement. It is believed that something happened with his oxygen in utero. He spent 5 weeks in the NICU and had hypotonia and seizures. Now he is 9 months. The seizures are gone and he now has hyperextensive tone. He also has no oral skills so he has a nissen and g-tube. Developmentally he is at a 3-4 month level. Recently we have found that due to his poor oral motor skills he is unable to swallow his secretions and has been slowly asperating on them so now he is on oxygen.
I am looking forward to getting to know everyone better here!
Originally Posted by mommy2three
I wanted to ask you if your son has ever been tested for Cerebral Palsey? (I don't have enough to go on by your post to actual suggest him having it, so don't panic ) I posted above about my 22 month old because we are currently dealing with his prognosis but I also have an amazing almost 5 year old boy who has mild Cerebral palsey. His beginning was very much like what you discribed- Jack was born (with his twin) by emergency section at 31 weeks due to lack of movement and Jack's heartrate flatlined. Because it took them a bit too long to get him out he was deprived of oxygen and I think this is why he has CP. Anyway, he had severe hypotonia for the first year, was fed by tube feedings for 8 months, etc. He couldn't hold his head up until a year or sit up either. However, now with extensive therapies (and luck) he can walk completely unaided and is very into sports He will always have special therapies and possibly be in special ed.
Forgive me if you already said this- but have you contacted birth to three programs? Almost every state has one
PS. Jack was also on a breathing and heart machine until 8 months old because he would also start to choke and aspirate on his saliva. He still drools a lot now but he doesn't choke on it anymore