A Need to Share

I feel I have this need to share our experience with other families who may be in the same situation as us.
My son James was born premature at 25 weeks. He weighed 1 lb 13 oz and was 14 1/2 inches long. James experience a pretty typical course in the NICU. He was intubated, had penumonia several times, required blood transfusions and started feedings by a NG tube inserted through his nose into his stomach. As time went on James got bigger and stronger. Finally about 7-8 weeks after he was born he accidentally extubated himself and happened to be ok! They left the breathing tube out and he did fantastic. As time went on the doctors noticed that James was always "squeaking" while he was breathing. After investigation they found that he had a narrowed airway because he had been intubated for so long. James was required to have a tracheostomy and finally came home 143 days after he was born.
As time went on we noticed that James was not meeting milestones. We knew he'd be behind because he was so premature so we didn't waorry too much, but we did enlist the help of our local Birth to 3 program and got him started with Occupational Therapy. Finally at 10 months old James was able to have a reconstruction surgery for his airway and he was able to get rid of his trach. We were so sure that things were looking up and James would surely start to progress in his milestones.
As time continued on James did not meet milestones. On April 11, 2009 we were given the devastating news that James had cerebral palsy. Our lives were forever changed. We were immediately scheduled appointments with specialists and therapists.
James is now 3 years old and we continue to struggle with the everday things that he cannot do. He is very much like taking care of an infant. He cannot sit, stand, eat normal food, talk or do much of what a normal 3 year old does. Regardless James is the light of our lives and we can't imagine our life without him. He is a very happy and content little boy. He loves Mickey Mouse and snuggling with his mom and dad. He loves to watch his little brother play and laughs at him all the time.
This blog is the story of our everyday lives living with a child with cerebral palsy-as a family.