We've known for most of X's life that there were going to be some pretty big hurdles he would face. Once we knew about the severity and location of the IVH that X had, we pretty much knew he would have cerebral palsy. It was really just a matter of finding out the exact type and extent of cerebral palsy he has. That would, unfortunately, take time. A child's brain is still growing and developing until somewhere between 18 and 24 months of age. Until X was at least 18 months old, we wouldn't be able to get the full view of what damage had been done as a result of the IVH.
About a month ago, X had an MRI. He was put to sleep and an MRI was done of his brain. We've had a copy of the radiology report for the past month. I'm not going to talk about it because it's written in what I'll just call "medical speak". It's VERY technical and it's taken us a few conversations with X's neurologist to understand exactly what we were reading.
The really important report we needed was actually written by the neurologist. We just got it a short time ago. A lot of it was background history about X, some is a simplified explanation of what was found on the MRI, and the very last part was the "Impressions". (Just in case you're wondering, on pretty much any medical report, "Impressions" is where you'll find the diagnosis information.) That section was - and usually is - very brief. There were three things that stood out. First, X has mild hydrocephalus which we already knew about. Secondly, it turns out X only has 1/2 of his cerebellum. That more or less just means he'll have extra trouble with balance and coordination. The last thing was Cerebral Palsy (CP) . The type of CP was also defined as spastic quadriplegia.
You might be asking yourself what that means. I'll explain what that means. First and foremost, I do NOT suggest you start Googling this! Not everything you find online is correct, some of it is very broad information, and some is written in more of that medical speak I referred to earlier. That can make it nearly impossible to understand.
Ok, here is X's CP diagnosis explained:
In super simple terms, spastic quad CP means that X had an injury to his brain (IVH) that has affected his muscles, coordination and balance. That's really all the important stuff to know. There are several types of CP. Spastic quad is just a fancy way of saying the muscles in all four limbs - so both legs and both arms - are affected in his specific type of CP. Now obviously, CP is more in depth and complicated that what I can explain here. What I can say is we've gone over everything with X's care team and have learned as much as we can about what this diagnosis means for X specifically. How it applies to him and his needs is totally different than it applies to someone else.
Here are a couple of graphics that might help explain the various types a little better:
Again, this is all super simplified compared to all the vast amounts of information about CP. This is just what applies to X. We already knew he had special needs. As a result of this CP diagnosis, we've been given more answers; answers that will help us to help him. He needs a wheelchair. We don't know if he'll always need it or not. The odds are he probably will. He may not always need it for full time use, but he'll likely always need it available to him. As a result of the type of CP he has and because of missing half of his cerebellum, his muscles tire far easier and much faster than yours or mine do. Every movement he makes is very deliberate and conscious. He uses a lot more energy to do something like hold his head up that you might. So, the wheelchair will allow him a place to rest and conserve his energy. It allows him to safely go where he wants or needs to go. For X, a wheelchair is a blessing.
So there you have it; the latest, greatest, up to the minute info about the journey we are on with X. It's an interesting ride to be sure!
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