Yesterday was a full day in the Burks household. Jaxson had a Neonatology appointment in the morning, followed by a neurosurgery appointment in the afternoon. Our friend Kelly came to visit from Charlotte and Jayson did a tattoo last night. That said, I obviously wasn't able to post about his appointments last night, and I'm not even sure where to start now.
I guess I'll start with Neonatology. Jaxson had a developmental assessment, which went really well. The woman that did the assessment said that Jaxson is at an 8 or 9 month level developmentally, which is an improvement over last time. That puts him about two months behind, and last time it was three, so he's catching up a little! Which is fabulous news, but we have an off-set to that news. We were referred to Neurology. Jaxson has been sitting on his own and crawling for about a month now. About two weeks ago, Jaxson started doing this thing when he crawls. He stops for whatever reason and leans on one side (doesn't matter which one). He'll sit there just fine for a little bit and then he'll start shaking/rocking back and forth. He does the same thing sometimes when he's on all fours. He'll stop and nod his head up and down repeatedly. He doesn't lose consciousness or anything, but it's definitely not normal. He also has a habit of kicking the hard plastic piece of his bouncer or the hardwood floors when he's laying on his back. He kicks hard. We think that it should definitely hurt him and it does not. Then, when we were at audiology on Wednesday, he was sitting by a door and purposely jerking his head back to hit the door with the back of his head. I moved him and he stopped, but that's still not okay. And he likes to bang the back of his head off of our chests if he's sitting on our laps. So we're not really sure what's going on there, but hopefully neurology will have some answers. Overall, Jaxson's Neonatology appointment went well. He's following his own little growth curve a little under the 3rd percentile, but as long as he's not losing weight they said to keep doing what we are doing. Which is what I was going to do anyway, I don't hold a lot of stock in those charts.
After Neonatology, Jaxson and I came home for a little bit to have lunch before we left again for Neurosurgery. The appointment was a follow-up to his spine surgery. We got our referrals back to OT and PT, so we'll be spending a lot more time at the hospital again, but that's okay. Dr. Jackson said that his spine healed up great and that Jax looks good. Then there's more bad news. Jaxson's head isn't growing as fast as it should be. His head measures 42cm and he should be at 43.8cm. I don't really know what that means, except that they're concerned and they want another look at it. They were going to do a scan on his spine again anyway, just to make sure nothing tethered back up and the spinal fluid they pulled hasn't come back. So now when they do that scan, they are doing another CT of his skull. The scans will be done at the end of June so they can look at it before the cleft surgery in July. If his skull needs redone, they'll probably do that before the cleft. They are also going to take a second look at his ventricles. They were a little prominent on the last scan, nothing major I guess, and it could have been due to his head being constricted. But with everything else, they will take a second look at those too. And he wants another test to check Jaxson's kidneys again.
In between the two appointments, I received a call from Genetics. Dr. Hickey wants to follow up with Jaxson too. We didn't get an appointment scheduled because he is booked through July and the August calendar isn't open yet. So I have to call back in a couple of weeks to schedule the appointment. Since there's new information for Jaxson now, and there will be even more by August, I'm hoping that he'll have something to tell us. I am so tired of this waiting game. So many disorders and conditions affect development, that the doctors have mostly been just tracking everything and fixing the things that are fixable. Which is fine, except that we have no answers. I have done so much research and have not found one thing that fits Jaxson. I can find things that cover some of his issues, but not all of them combined. Hell, maybe he'll have something named after him. I don't know, it's just so frustrating. The doctors keep telling us that we're doing all of the right things to make sure he's treated properly, but until I know for sure what his diagnosis is going to be, I won't be able to trust that.
When I was on my way home, I called Jayson to tell him what was going on. His response was a heavy sigh and he asked, "It kinda feels like we're starting round two, doesn't it?" I said, "Yeah, it sure does." It's like we get amazing news about his development and how he's progressing by leaps and bounds, but then we take a step back with his body. I'm trying so hard to stay positive, but it's not easy. I sit here and think about everything Jaxson has gone through and I wonder why he can't just be done? Why do things keep popping up that need addressed? Why can't he be like a "normal" baby and not go to the hospital at least twice a week? I just want to grab him up and cuddle him forever and tell him that everything is going to be okay. I want to tell him that he's perfect the way he is and that he is special. I want to protect him from all of the craziness in the world, not take him to a place that is always stirring with craziness. I want him to always be as happy as he is now so he can keep lighting up the world with that smile. I don't want him to know pain or loneliness, although my rational brain tells me he will experience both in life. I just want him to be a regular boy and experience regular things and not be stuck in a waiting room all the time. I want so much for Jaxson, he deserves the world.
And then I think about what he has coming in the next months. I can't believe we're scheduling appointments in August already. He has urology appointments, scans on his head and back, cleft palate surgery, potential skull surgery, eye appointment, all of his regular therapies plus we're adding speech, audiology, HMG and RIHP appointments, a well baby check, and, oh yeah, his birthday! And then we're into September where he'll go back to cardiology for a checkup. It's overwhelming. We have an entire page of follow-up appointments each time we leave the doctor because they print out the upcoming appointments you have. It's just so much.
The hardest part for me is waiting to see about the skull. They can't do anything else with the front of his head because they already advanced it as far as they could. Which means they'll have to somehow expand the back of his head, which is flat. I have no idea how they are going to do that. You can't round bones that aren't rounded. So, what, will they take off part of his skull and put in some kind of plate? Will they have to do bone grafting? How long will it take and will he need a transfusion? What's the recovery time? How restricted is his activity going to be afterward? Have you ever tried to make a baby stay confined? Jaxson hates it. He wants to be on the floor all the time. There are so many unanswered questions, and everything is a waiting game.Everything in my life is a waiting game right now. I'm on the edge of my seat all the time, there's a tightness in my chest ready to burst into adrenaline when the time comes. Sleep, even though Jaxson actually sleeps through the night now, is nonexistent. Leaving the house is a chore. I'm irritable and moody. And I feel bad for Jayson and the kids because I have no control over any of it. I'm going to see if the doctor thinks I should up my meds when I go next week, just to make sure I don't lose my mind.
Well Jaxson is waking up for his lunch so I guess I'd better feed him. Will update when there's more to tell you!
"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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