We finally got our internet last night, and I logged on today to discover that I haven't posted in over six months. For that, I apologize. We are hopeful things will be back on track now!
The last six months have flown by. Jax had his distractors out and cleft palate fixed and after that we haven't had any inpatient stays, our longest stretch by far! We did have to go to the ER a few times for various things including a fall down the steps, but that's to be expected with you have kids and especially boys.
Everything was going very smoothly until Jaxson's eye appointment two weeks ago. They discovered that his optic nerves are elevated and that he also needs glasses. I'm pretty sure I called that from day one, but Jax cooperated well at the exam and they were able to get a really good look at his eyes. So they put in a call to neurosurgery who referred back to plastics and we have that appointment tomorrow. I had to push for an MRI because no one else thought of it, and we had that last week. I haven't seen the report yet, but I was told that his nerves are elevated about a millimeter. I just don't know if it's a CSF flow issue or a space issue. Well, the doctor didn't know when I spoke with him on Thursday. I know it's a space issue and I've been preparing myself for another surgery for months. I knew we weren't done and I'm not convinced we'll be done after this one. He just has so much stuff going on in his little body and I don't think he can handle it all. At least he's happy all the time!
I am pretty confident in that he'll need another distraction surgery. You know, the one with the metal device in his head and the pins that we had to turn for 30 days. Yeah, the one that was awful. But, if we have to choose between that and a shunt, I'm going with the surgery. A shunt is permanent, so if we can fix his issues without placing a foreign object in his body on a permanent basis, then that's what we're going to do. My hope is that it will also relieve his Chiari and he won't have to deal with a decompression/fusion surgery at some point.
I think that this is suddenly becoming difficult for me. I'm struggling more each day with how Jaxson is progressing and how his body reacts to everything. Not having a known syndrome is making me crazy and I scour the internet for answers that I can't find. We have genetic testing next month, and I know that will at least give us something, but it takes 3-4 months for the results as the test is sent to Baylor. We try our best to live each day to the fullest and to make sure that both of our kids are happy, but sometimes it just feels like it's never enough. Jaxson is always happy and smiling, but he gets left out of a lot of things because he can't handle being in the sun for very long. It doesn't matter if he's in the shade or not, the brightness of the sun crushes him, and the pressure in his head right now only makes it worse. That and it makes him sleep a lot, which concerns me. I know, before he wouldn't sleep enough and now that he is I should be praising God, but when you have kids, anything out of the ordinary is cause for concern. And I'm frustrated with the doctors for not having a bigger sense of urgency about this situation. They don't seem to be concerned at all, but part of me thinks it's just because they know they can only do so much and right now that means wait. I just want some answers for my baby. Until we get some, I won't know if he's getting the proper treatment or therapy recommendations. I mean, the therapists are great at seeing what he needs help with and adjusting their plan, but I am looking at the future. I want to be able to plan a course of action and I'm stuck here, helplessly waiting for the doctors to tell me what's next.
I've become extremely active in some great Facebook groups recently, and I've found a ton of support there. I've given a box of formula to a mom, I've sat with a mom while she waited to hear about surgery, and I've spoken with numerous moms who have supported me and answered my questions as well as me returning the favor for them. I'm closer with some of those moms than I am with my, now pretty sparse, circle of friends. Not only do we understand each other, but most of us stay home with our kids because we can't afford to pay a nurse and our "special" kids can't go to daycare. So they're around when I am, where my mom friends of "normal" kids tend to have jobs and extra activities to do with their kids. Which is awesome, I can't think of any of my mom friends that don't go all out for their kids, just like moms of special kids. It's just a different kind of "going all out" and the term "going mama bear" on someone has a whole new meaning. Because rather than it being another mom or someone else's bratty kid, we get to act crazy with doctors and there's nothing they can do about it! :) But I do wish that some of my friends would remember that I also have a "normal" kid in Jeffrey. He loves people and other kids, he's very social and extremely active. Jax isn't house-ridden either, we just have to find a place with shade for him. I don't think that's too much to ask.
So maybe this is more me getting used to being at home all the time. Jayson said it took him about a year to get into a good routine with the boys and I'm just about there so I guess I'm right on track!
~"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
