There's not really a whole lot to update on as far as Jaxson goes. I am starting to go back through his medical records and getting copies of things I don't have to do some research, but there's only two things I've found that haven't been discussed or researched in full. And I won't have all of the information until after his next surgery because they want to get through that before we move on to the next thing. Which is fine, but leaves me with questions until then.
The first thing about Jaxson is that he does have a Chiari 1 malformation. If you are unfamiliar with the term, basically his brain is pushing down into his spinal column. This was likely caused by the tethered cord. When the cord doesn't separate from the skin completely, the spine stretches as the body grows. That alone causes pain, loss of feelin in the extremities, loss of sensitivity to temperature, etc. It could also be caused by the craniosynostosis because his brain ran out of room to grow. I know they are hoping that this distraction surgery relieves some of that, but I'm not holding my breath. You can read more here.
Th second thing is that Jaxson has a syrinx. I'm sure one of the doctors told us that before, but I didn't remember hearing it, so I was surprised when I saw it on the report. It extends from T11/12 to L2/3 and is 2.5mm. A syrinx is a fluid-filled cavity inside the spinal cord. Over time, it will expand and elongate, causing damage to nerves and impeding funcionality of the extremities and bladder/bowel. A syrinx can be drained, but not removed, and sometimes draining it doesn't fix the problem. It can cause life-altering problems and irreversible damage if not treated properly. You can read more here.
The third thing is that he's had fluid in his brain since birth. It was noticed on the brain MRI he has last year, but apparently it wasn't conclusive. And it's the main reason I'm concerned about the way getting his pins out is going. Dr. Pearson got X-rays last week when we were there, but he wants another set this eek before we meet with him. We're basically going to check in at plastics, then go down to X-ray, then come back and meet with him. The way the tech reacted last week does not leave me feeling confident about the appointment. First, he asked us to wait to make sure the radiologist didn't want any more pictures. They've never had us do that before, but he was training two people so I just kind of let it go. When he came back to tell me we could leave, he kind of hesitated, like he wanted to tell me something. But then he just said we could go. So. Could be nothing, could me something. We won't know until Thursday.
And finally, something positive! I must say that watching Jaxson grow has been, and still is, so amazing. He knows his limitations and he uses his environment to achieve his goal. Whether it be getting to the other side of the room, or pulling/pushing an object to get another object. Watching him explore the living room, or whatever room he's in for that matter, is such a joy. He makes the most hysterical faces and when he figures out that something makes up I laugh, makes you excited or makes you smile, he will repeat it until you quit reacting to it. He's so vocal! I watch him watch our mouths when we talk and when we eat, and I can see the yearning in his eyes to do the same. He communicates with a series of ah's, uh's, ma's and na's until you figure out what he wants. I know it frustrate I him, especially because he doesn't understand why he can't do those things. And every time he has a hospital stay he regresses. It's hard to watch him relearn things like clapping and baby sign language. But then he makes this huge leap past where he was pre-admission and we think he's going to start making significant progress, but then he'll plateau or end up back in the hospital. As hard as it is for me to see him struggle, Jaxson is such an inspiration. He's always got a smile on his face, and even when he gets frustrated he never gives up. Everyone could take a lesson from him in how to enjoy the small things, the next milestone, and just relax. Don't get me wrong, he's still a 15 month old baby and he's not a bundle of joy all the time. But he only fusses when there's a legitimate reason (ie. MRSA), and once it's fixed he's all smiles again. He's just happy to be here!
On top of all of this, I am taking Jeffrey to the doctor tomorrow. I have been meaning to switch him to Children's for awhile now, but I finally got the appointment made. So he'll be a new patient, and I really hope they listen to me and address my concerns. I really think that Jeffrey is borderline diabetic or has Type 1 diabetes. He constantly has to have a drink in his hand, and if we're out in public, he has to stop at every water fountain for a sip. He has other symptoms too, but his last doctor thought I was just a paranoid mom and told me it would pass. Well, he's almost 5 now, and it hasn't passed. Time for a new doctor. And hopefully they'll address his eating habits (or lack there of) too. Although fixing his insulin, if that's the problem, will be a good start! Don't get me wrong, I have no desire to have two sick children. None. Promise. I spend enough time at the hospital as it is, more visits are really not necessary. But my mom gut has been telling me this for too long to ignore any more. I pray that everything comes back normal, and I pray that the doctors will do the necessary tests.
I think that's all I have for tonight. Early appointment tomorrow. Three appointments Thursday. Hopefully all with good news!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
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