A Diagnosis

Well after his neurologist reviewed his new MRI, Wesley now has a diagnosis of Cerebral Palsy.  The good news is they didn't see anything they weren't expecting on the MRI but it did show that the damaged parts of his brain have died and fluid has taken their place.  After the neurologist explained everything to me, I asked if she thought CP would be in Wesley's future.  She responded that they don't normally diagnose CP until a child is 2-5 years old, but she would feel comfortable going ahead and giving Wesley that diagnosis so he can get "as many services as possible."  Apparently the way our system works, many services are not available until there is a name for whatever is wrong with a child.

So CP is our diagnosis (I know technically it's only Wesley's diagnosis but I feel like it affects our whole family so we can all claim it). I think I had prepared myself for the inevitability of this so it doesn't hit as hard as I thought it might.  When strangers ask about him, I now have a much easier way to explain his situation.  Hopefully this diagnosis will make it easier to get insurance coverage and other services for him so he can live up to his highest possible potential.  Although, saying he has CP doesn't really answer our questions or clarify our future.

It is a diagnosis of his symptoms not of their cause.  We still have no idea why his heart stopped beating and if it has a high chance of happening again with future pregnancies or if other complications will one day appear with him.  We're still waiting on some blood work they did on me to look for a root cause but right now there are not any good directions for answers.  Everything we're looking for at this point is unlikely which reinforces the NICU doctors' theory that we would never have an answer.  I appreciate Wesley's doctors' willingness to keep looking but at some point we won't have anything else to look for.  It's crazy to me how little we really understand about our bodies, especially the brain.  So CP tells us that being deprived of oxygen and blood did damage to Wesley's brain (which we already knew but at least now we have a name for it).

The other problem with a CP diagnosis is we still have no idea what the future will be like.  CP covers a huge spectrum of disabilities so Wesley could end up nonverbal and in a wheelchair his whole life or he could simply have a strange gait to his walk.  Right now there is little to no way of knowing where he will land.  Not knowing makes every thing he does (or doesn't do) feel like a symptom rather than part of who my baby is.  I feel like I've said a lot of this before in an earlier post but if so, know it's because it's still weighing heavily on my mind.

So now we have a name for Wesley's disability but nothing really has changed.  We still will visit the same doctors (eventually we'll probably add an orthopedic surgeon), we'll go to the same therapies, he'll take the same medications (although we're trying to wean him off of his seizure meds), and we'll continue to wait.  I'm trying each day to enjoy the extra time I have in each developmental phase and savor my time with him.  Colby said years ago that he thought he would have a child with special needs because God needs to teach him patience.  I guess he was right and I'm sure we will become incredibly patient people as we learn to wait on doctors, tests, and Wesley.

I think he has the best smile in the world!  I can't wait to hear him laugh some day.