Friday, December 9, 2011

Cerebral Palsy, Two Words I Never Wanted To Hear...


On Wednesday Noah had a “physical rehab” appointment in Ann Arbor. Finding the place was a trip considering we have never been there and it was kind off off on its own. Not to mention the road to get there was closed and we had to take detours and whatnot. But all of that aside, we got there just on time and were seeing our doctor withing minutes of checking in. U of M has yet to disappoint me.

She started off by asking us all sorts of questions about what we had noticed about Noah and what our concerns about his development are. Noah stayed dead asleep for all of this somehow. Even when they weighed and measured him. Only waking up as the doctor was headed out of the room after we were done.  After a 15-20 minute Q & A, we laid Noah down on the table and she began her evaluation.

As with most of his evaluations so far there is only so much they can tell us due to his age. I think she gave us a pretty good picture of the range of things we should expect. She didn't pull the punch that I think a lot of the other doctors and physical therapists have. She came right out and said that he has cerebral palsy. Hemiplegic Cerebral Palsy to be exact, meaning that it effects one side of his body. In Noah's case, his left side. We had known that this was a pretty significant possibility, and saw some of the signs...but hearing it from a doctor kind of made it real...

She did say that he won't be diagnosed officially until he's older, due to the nature of cerebral palsy. But she is pretty sure that is what we are dealing with. However we should not write off that he could have a mostly normal life. In fact she is pretty optimistic about his future. She then pulled up his MRI and other documents (gotta love online medical records) and looked over his MRI for a moment and said that she doesn't see his condition being all that serious. Yes there will be effects from the damage, but they shouldn't be catastrophic by any means. But she did say that children with Hemiplegic Cerebral Palsy are at risk of seizures their whole life. So we should remain vigilant in our watch for more seizures.

She thinks he should walk in time, Possibly needing a brace to help him along at first. She did say that his left hand my be a little more damaged than we would hope for, but not useless. It could be more of a “helper hand” if you will. She was sure to remind us that it is still VERY early to be making these predictions, but she doesn't see him being a sever case, but also that it is very hard to predict these sorts of things. She said that she will remain cautiously optimistic about his development and is very interested to see how he will turn out. As she will be his doctor until either she retires or he leaves her service for whatever reason.

She also mentioned some of the treatments they use for his condition as he progresses. Mainly Botox injections to help his muscles relax. But it will be years before we even consider having that done. And also that Early On should be all the therapy he needs at the moment. Maybe more when he starts getting ready to walk and so on. She also made sure we know that Cerebral Palsy does not get worse over time. The damage is done, and the brain should not get any worse. Though the symptoms (muscle tightness) can seem worse over time due to growth spurts and inflexible muscle tissue being stretched further. But they usually even out in time, especially with therapy and treatment.

Another note the doctor hit was that his frontal lobe damage could very well be nothing of concern. Saying that she was born with frontal lobe damage and she became a doctor...so there is no real reason to think that this diagnosis of Cerebral Palsy should in any way mean Noah won't be a bright child. She is however concerned about his vision because of the damage done to that part of the brain. However she thinks that he is seeing, but how well is a whole other issue. Motivating a child to develop normally is challenge enough. Take away their sight it gets even harder. So we will be watching that situation very closely.

It hurt to hear those words roll off the doctors tongue...But also made everything feel a little more real...We still don’t know exactly how Noah will turn out, But now we have more of a range to expect. The range we were giving is no parents ideal situation...We have however, mostly ruled out (not entirely...) a severe outcome, which is comforting in it's own way. 

Noah is the most amazing person I have ever met in my entire life. I have no doubts that he will rise to the greatest of all outcomes available to him. And I will be there every step of the way, making sure those options are never closed to him...and picking him up when he falls down.

5 comments:

  1. It's going to be OK, Ryan. They thought I had CP when I was growing up, and didn't figure out I had Aspergers till very very very recently. Maybe it is, maybe it's not. If it isn't, you'll be relieved, but if it is, I know you and Katie (AND NOAH!) will handle it. I just wish my mother had internet access, because she is a PRO with special needs children. She works with them on a daily basis.

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  2. Things will turn out how they are suppose to...and I'm sure with all the help that Noah is getting, he'll be fine....or rather, he'll be Noah. There is no such thing as 'normal', and everyone has some sort of disabilities. It's just a matter of how visable the disability is or isn't.

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  3. He will be special and amazing whether he has disabilities or not. You will be blessed with a wonderful life with him.

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  4. My cousion who is in his 50's has Cerebral Palsy. As with each cash being different his was pretty sever. He has been in a wheel chair for most of his life, he can't speak or interact with others but he knows what he likes when it comes to food, music and other things.

    with that said it sounds like your son has a mild case if there is such a thing and it sounds like he has all the doctors and you doing all that he needs to have a full and wonderful life.

    Keep up the good work. Things will work out great I just know it.

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  5. If you haven't already, you should check out the blog of another HIE parent whose son received a diagnosis of cerebral palsy this year- he's one of the happiest, funniest and most awesome kids out there, and I think you'll find a lot of inspiration in his story:

    http://amazingjoshua.blogspot.com/

    In addition to the HIE support groups I've previously suggested, there's also a whole community for kids with hemiplegic outcomes called HemiKids- you can find it here:

    http://www.hemikids.org/

    I'm really surprised that they'd make such definitive comments at this age- generally doctors and therapists prefer to wait and see what happens, because so much can change. But either way, cerebral palsy is just two words, and they won't define Noah in the end- he'll decide who he's going to be as he gets older :)

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