“It ain't what they call you, it's what you answer to.” ― W.C. Fields

A few posts back, I talked about IVH, and what that meant. I also mentioned there were some other things that related back to having IVH that we would talk about later. Later is today for one of those things: Cerebral Palsy.

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! 

The S word...

The S word came up the other day in a conversation regarding X. No, we weren't at all surprised. In fact, we were almost giddy that it was used...although, this is probably not the S word you're thinking it might be! I'll explain...

One of the complications of X's delivery and prematurity is a hernia...and it's a doozy of one too. It's very large and....well, here I'll show you:

This is what is looks like from the inside....

And THIS is what it looks like on the outside...


















Unbelievably, this was taken on a day when it was "smaller". Yeah...not good.

There are many theories about what kind of hernia this is exactly. We've heard it's diaphragmatic, maybe abdominal..there are lots of guesses. It doesn't really fit into ANY category. What I can tell you is that X has had this since he was just a few days old. For basically his entire life, he's had to try to do everything from eating to rolling to sleeping and anything else babies do with this huge ball on his side. It's been a rough journey to say the VERY least.

The complications from this hernia and the pressures it causes range from reflux symptoms to now the beginnings of scoliosis. We've been to see multiple surgeons and each time we were more or less dismissed. This did NOT make this Mama a happy lady.

You see, what I couldn't seem to get the surgeons to understand was how much this one thing was negatively impacting X's life. He can't drink more than 4 ounces of his bottle at any one time. He has reflux that he didn't have before this got so large. He struggles with GI problems from the hernia compressing his GI tract. And now his spine is starting to be affected as well. While the rest of the issues aren't great, they're manageable with round the clock care and a big team working together to make sure X's needs were being met. Then we found out that his SPINE was being affected. Frankly, that's not a side effect we were willing to put X through.

So, we went back to the surgeon a few days ago. We went very prepared this time. We had letters from as many other members of X's care team as we could possibly manage. In these, they each explained how this hernia was impacting their specific realm of care for X. They talked about their observations about how it was negatively impacting his quality of life. They talked about their concerns with it not being addressed sooner than later. We went prepared with examples of how each and every symptom caused by this hernia had worsened since our last visit. Finally, we talked to X's GI doctor who PERSONALLY went to talk to the surgeon face to face and they agreed it was absolutely time to deal with this.

So in a couple of weeks, X will go in for surgery to finally repair this hernia. Yes, the dreaded S word.

The downside is that this will be a big surgery. It can't be done laparoscopically with the size and placement of the hernia. There's too much risk of puncturing something that shouldn't be punctured. Instead, X will have to have the repair done through a large incision on his abdomen. It'll reach from about his belly button to his back. It'll be large. It'll hurt. It'll leave a pretty big scar. It means several days of being in the hospital to control pain and get him back on track.

If I said I'm looking forward to this, I'd be lying. I'm absolutely not looking forward to the surgery part. It's risky but necessary. I know he needs this...but just like every other time we've had to make a hard choice or agree to put him through a hard procedure, I worry. He's my baby. He's already had to fight so hard in his short life and sometimes I really dread putting him through more. Despite my own fears and worries, I know in my heart of hearts this is the right decision for X. It will improve his overall quality of life. If it was purely a cosmetic procedure, I wouldn't even consider it. X is perfect exactly how he is. But, as I watch X struggle with so many complications that make his day to day living so HARD for him - all of which are a direct result of the hernia - I'm reassured this is right. This needs to happen. I AM looking forward to the positive impact this will ultimately have for X...and I'll be right there with him through it all.