This post was published exactly 3 years ago today, on the day of Asher's CP diagnosis. Seems like a lifetime ago now. I wish the family that received the news that day could see the family that we've become. Since that day, we've all grown in ways I can't even put into words...
I'm not going to beat around the bush about the results from our appointment today.
Asher has Cerebral Palsy.
Cerebral Palsy is a non-progressive brain injury. The damage was done when his brain hemorrhaged shortly after his birth and it has not worsened since; however, as he develops, we will see more and more of what he is capable (and incapable) of doing.
This diagnosis is not a shock to us, I promise you. I'm sorry if it is to you, but the signs have all been there and we have not hidden them. Since his problems at birth, we knew this was a possibility. At a couple of months old, we realized it was probable. In the past few months, we accepted that it was inevitable. We knew that this diagnosis would come at today's appointment and we were ready for it, as ready as you can be anyway. I am tired of telling people he is delayed or has "muscle issues". I am ready to make people aware.
Asher is not delayed - delayed implies he will catch up. He won't. With continued therapy he will improve his skills, but only time will tell how much. His right arm is very weak, his left arm is less than ideal, and his legs are tight, but hard to tell how much function they have. Currently, our biggest concern is his core. He is very floppy, still nowhere near sitting.
Until he is two years old he will not get an official diagnosis of type of CP because the doctor wants to observe him and see how he progresses in that time. She does want to send him for an MRI as he isn't "fitting the box" of typical CP patterns, making his type harder to diagnose. She thinks he may have Athetoid Cerebral Palsy, characterized by fluctuating high tone (tightness/stiffness) and low tone (floppiness), however he isn't showing some of the other symptoms of that type, namely issues with talking and swallowing. The damage shown on the MRI will help her with the diagnosis and in turn, treatment.
At this point, she put him at a 3-4 out of 5 on a severity scale. 1 is the best - minimal problems, and 5 is the worst - in a wheelchair with no speech and head control. [Update 03.21.2014 - Had I written this now I would never have used the words "best" and "worst" to describe numbers on the scale. I should have worded it more like "least motorically affected" and "most motorically affected". Semantics, I know, but that kind of thing matters to me now.] Knowing she has absolutely no way to predict the future, I asked her what a 3-4 means. She said walking with a walker and maybe a wheelchair for long distances. The best indication of walking ability is sitting by age 2. That gives Asher almost a year (corrected), so that is our first goal.
You're probably thinking this is all pretty crappy, right? Well yes, I suppose it is. But here are some positives to count on:
- Everyone feels confident that Asher is not congnitvely impaired in any way. He is smart as a whip, social, happy and completely in tune with people and his surroundings.
- He has proven himself a miracle many times over. Why not again? Not saying he is going to come away from all of this "cured" - not at all. But saying maybe that 3-4 out of 5 on the severity scale turns into a solid 3, edging closer to 2. That can happen, right? [Update 03.21.2014 - Asher is solidly a 4 on the GMFCS scale. But you know what - that's ok! I might not have known that three years ago but I know it now! A number doesn't define Asher's capabilities.]
- He is motivated. That cannot be taught. As long as he has the will to try, his possibilities are endless.
- He has all the therapy he can take advantage of and we are doing everything right. Nothing will change because of this diagnosis. If anything, the answers can only make life better from here.
- He is loved and supported by more people than we can count. So please do not think of it like this is the worst news we have ever heard because it's not. The last thing we want, for Asher our ourselves, is pity. Certainly not to our faces, nor behind our backs. Asher will have to work harder, without question. We all will. But we will all be better, stronger people for it. We are going to raise three kids who see the world with a lot less prejudice than the rest of us do, who are more empathetic to others, and who have strength that I have no doubt will amaze me daily.
We are blessed, CP and all. It may be Asher's diagnosis, but it is not his definition. He will do great things, mark my words.