It's bee way too long since my last post, but the lack of sleep around here is killing me. Jaxson is growing like a weed, he weighs close to 11 pounds now! He's only had a few PT and OT visits since my last post, so there's not much to report as far as diagnoses, etc. I will say that he is still slightly behind on his development and where he should be. A lot of that can be attributed to being in the hospital for 6 weeks, some of it may not be. But I'm not overly concerned at this point, there are way too many other things going on to be worried that he's not trying to reach for objects yet. Well, let me rephrase, you can see he's trying, but his low-muscle tone isn't allowing him to do much more than attempt.
So the real reason for this post is to talk about Jaxson's skull surgery. On November 1, Jax will have the 3D image on his head, a brain MRI and a spinal MRI. The 3D image is to make sure there's no additional fusions and nothing new or different from the previous MRI that was completed. Same with the spinal MRI, although that surgery won't happen for a couple of months. The brain MRI was ordered by genetics. One of the reasons that bond fuse together in the skull before they're suppose to is that there's something structurally different about the brain. So this scan will tell them is his brain is normal or not. Don't ask me about the "or not." I chose not to ask what that meant because I don't want to worry about it when it's not necessary. If its a problem, I'll address it then.
Jaxson's first surgery is scheduled for November 5. Scans on the first, surgery on the 5th. It's a 4.5 hour procedure. Thankfully, Sara agreed to watch Jeffrey that day and my parents agreed to have Jeffrey spend the night the night before. I feel very lucky to have a family that will support me while all of that is going on. And especially lucky to have a husband that understands that I will be spending that first night in the hospital. Jax will be in the hospital anywhere from 4-7 days recovering. Now that he's been home, leaving him there is not going to be easy. I haven't slept much in the last few days since I scheduled the surgery, and I don't anticipate sleeping much until this is over. Jaxson is going to have plates and screws in his head, from my understanding of how this works. He'll have another blood transfusion. His eyes will swell shut for a few days. I'm going to be a mess.
I took that entire week off from work, which poses a problem in itself. Thankfully I have an understanding boss, but I've now added more stress to her. See, that's the week before she gets married. So she's taking off Thursday and Friday that week, the other manager is off Tuesday and Wednesday that week because she's working the weekend. So that leaves 4 days where there's only one manager. I'm hoping we can get some help from another branch, but if not I said I would come in during the evening and close the branch if I had to. It's not something I really want to do, but it would help the branch and probably take my mind off of things.
I'm so nervous and scared for this surgery. I know it's more common than most people think, but this is my baby we're talking about. They're going to cut his head open, remove everything that protects his brain, rearrange it, and put it back together. I nearly shed tears every day. I can't eat, I can't sleep. I can't focus on anything. And there's nothing I can do about it. If we don't do the surgery, his brains won't grow the way it's supposed to and we'll have even more problems.
And poor Jeffrey has been such a trooper. He's still wetting the bed sporadically, but his stutter is better, almost gone really. He craves our attention and we try so hard to give it to him, but sometimes Jaxson requires both of us. So most of the time he sits back and quietly entertains himself, but sometimes he's in our faces and other times he is quiet but misbehaving in another room. He's a typical 4 year old boy who loves to play outside and wants to show me how independent he is every day. And thank God he's so well adjusted or we would be in trouble. I am truly blessed to be his mom.
I'll have to cut this short now, my eyes keep dragging shut and I'm attempting to watch Ohio State beat up on Indiana. Please continue to pray for Jaxson. He's got a lot going on and a lot coming up. I need him to be okay!
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