Today, Amy’s little brother had his first NF appointment with his geneticist. Amy tagged along, so that we can start getting their yearly NF appointments synced up.
The appointment went well- nothing super surprising. Her brother has NF1 *gasp!* and they need to have their blood pressure and spines checked at every doctor’s appointment, and take their vitamin D supplement every day. So, nothing really new. Amy and her brother look perfect… except Amy’s leg. So now we will get to see both of them together again in clinic a year from now. They will also both be getting their eyes checked on March 27th next year. So their NF related appointments are all synced up from this point. ??
Amy had a bad pain day today. She refused to wear her brace all day long. Consequently, she spent the entire day either in her car seat (in the car), in a wheelchair, or crawling around on the floor like an infant. ? That is hard to see, but it’s our reality right now. However, she’s a happy girl! If she can keep a smile on her face- I ought to as well. ❤️
But then, guess who called??? I was super happy when the phone rang, and I saw the Caller ID said “Oakland.”
Amy’s long-awaited x-rays finally we’re digitized and seen by her doctor today. Okay, let’s be honest, a big part of the problem is because I’m lazy and didn’t put them in the mail soon enough. I need to find a better plan for this. Maybe next time I’ll take an appropriately sized addressed, stamped envelope to the radiology place. (Seriously, they can’t be electronically transmitted why???) Regardless, the x-rays finally we’re seen. So for the first time, Dr. Hoffinger got to look at real x-rays, not just the JPEG images of them that I sent.
Now, we trust this man implicitly. I knew the x-rays were there, and I sent a message saying that whatever he wanted to do, that’s what we were do. If he says surgery that’s what we’ll do. If not, then we won’t. End of story. No questions.
Well, guess what?
I was not expecting that. I suppose I should have expected it, because I thought saw growth myself in those x-rays…
Anyway, at the end of the day Amy is not having surgery at this time. Her leg is healing!!! (Cheers Exogen!!!) That’s all that matters in my little world. Well, almost all. Spending the entire day in a wheelchair, or hopping around on one leg is not okay. Also, Amy doesn’t seem to know what “slow down “means. So being trapped in the chair is frustrating for her. She still in pain, she still having cramps, but Icy Hot and Tylenol really seem to be doing the trick to manage her pain… except in those moments where is really bad.
She is still sleeping in our bed, which is annoying. But it is what it is we have to do to help her, right? I think we will move her bed back into our room so we can reclaim our bed, at least. She has also slept through the last couple nights, so that’s positive. But it also wasn’t that long ago when I was talking about how it was the worst night ever… So I have to recognize that these days are kind of coming and going.
The question is, what the heck is causing this? I don’t think it’s because of a bone issue- I don’t think it has anything to do with union. But I wonder if it’s that healing pain that he talked about… and I really wonder if it has anything to do with her brace being too tight- which I suspect that it is. Tomorrow we’re going in and molding for her new brace, so that is something that I am super looking forward to.
When she’s in a new, well fitting, appropriately sized brace, I’m hoping that these attacks all die down and she’ll be back to her old self. Be that as it may, that may not necessarily happen. I’m really hoping it’s a combination of her brace, and muscle atrophy. So I’m gonna push Dr. Hoffinger to authorize a hinged articulated brace next time- after we have some good stable union. And no, I don’t think that I’m being too pushy on this.
Dr. Hoffinger himself said that he would be okay with the hinge when she more union down at the distal part. So I’m thinking he’s going to be on board for that. But what I really want more than a hinge, is physical therapy that focused below the knee on her lower leg strength. He is not going to like that. What did he say? “Everything below the knee is mine. Don’t touch it.” I’m hoping that in the next few months if things go well with the new brace, and with the bone stimulation, and with the cramps dying down some white, that he’ll be willing to lighten up his need for perfection and give her a little freedom. Then she can build some muscle where she desperately needs it.
In the end, I’m hoping that between a well fitting brace, the ability to move and bend her ankle, and some physical therapy to help her build some muscle, that will be able to better manage her pain and maybe, dare I hope, end her pain. ❤️
But what do do in the interim? That hurts my heart. But she’s smiling! ❤️