If I were giving today a subtitle it would be: words people don't like. You see, there are words that make people cringe--make them turn away or shut down. For many, cerebral palsy is one of those words.
You see, Charlie has cerebral palsy. They told us in the hospital when we deciding whether or not to keep him on life support, that he would have it. They said he could be in a wheelchair. They also told us that he might be retarded. Wow, those are two more words that most people wouldn't want to hear.
In the hospital, when choosing between that and no baby at all, it was an easy decision--I wanted my baby. Now that I'm home, it's hard to see him poked and prodded, labelled and diagnosed. Today we got our official diagnosis: spastic quadriparesis, and truthfully, it fills me with tears. It's a diagnosis that comes with a lot of baggage--having all four limbs affected means a much greater chance of mental impairment. It's kind of funny because in the hospital mental impairment was the least of my worries. I spent the last few years working with kids of all different IQ's and I knew that with the right direction a kid with a low IQ could still work, have a family, and be a part of society. Now, I'm scared to death.
The degree to which his muscles have been affected still seems mild at this point: tight hamstrings. Right now, we'll give him lots of stretches and splints on his knees for when he sleeps at night to keep him from curling up too much. Later on, the doctor predicts an oral muscle relaxer. Cognitively, he seems OK at this point, but babies aren't expected to do much. I'm trying to take it one day at a time, but today that's a little hard. I'll try listing some positives:
He eats great! We've moved up on the weight chart.
We finally made the height chart (gosh darn short genes)
Doctor thinks his neck strength looks good.
He's reaching for his toys although he doesn't make contact most of the time.
His legs are strong and he stands pretty well if you hold his hands.
He makes his own noises, smiles, and laughs.
He's putting things in his mouth.
He's using his vision more and more.
That's all I've got.
PS: If any of you are so inclined, googling cerebral palsy is a pretty mixed bag--there's a lot of misinformation out there. Feel free to ask me a question if you have one--I'm pretty up-to-date on my research.
