I have been valiantly trying to uphold my New Year's Resolution of remaining fearless - we can conquer whatever is thrown our way. We will be fine no matter what the outcome. We will be fine... we will be fine... we will be fine... But as our appointment quickly approaches, and the waiting is over that mantra gets harder to say. The time has come to face the impending facts, plan my questions, and try to be prepared. Before I delve too deep, here's the drafted post I found:
April 15, 2012
I was reminded recently just how fragile dealing with a child's medical issues is. You never know what information you are going to get. And no matter how many hours you may spend thinking of all the possible outcomes.... you've never fully prepared for a doctor's appointment. At Makenna's last appointment in November, the one scenario I wasn't prepared for, the one I hadn't spent hours contemplating, the one I didn't have any prepared questions for, was ,of course, the one we were presented with. And no matter how knowledgable you feel about your child's medical situation, you just can't think that fast. It's not enough time to formalize your reaction and your thoughts.
For that reason, I am so very thankful for the professionals we have been blessed with. I have e-mail addresses and phone numbers for all of Makenna's doctors. Direct e-mails. Direct numbers. We are lucky enough that those directly involved in Makenna's care are invested enough to offer individual, personalized care.
I've kind of been holding my breath since that last appointment:). November to May is a REALLY LONG TIME! At our last appointment, the doctor first suggested that Makenna stop wearing her brace all together. That didn't sit well with me, didn't make much sense and worried me a lot! Afer much deliberation and discussion, it was decided that Makenna could indeed continue wearing her brace and if she needed a new one when we came back in May, they will make one. I don't feel like I bullied her DR into that decision. I feel like we had a very intelligent discussion about where she had come from, the statistics of kids with HGPPS may weigh in on the decision we make for her, her tolerance level of treatment, and what ultimately may be best for her in the long run. I don't think I changed his mind, I think, together, we re-thought what might be a normal course of care.
We've got just over a month until her next appointment. While I want to freak out about the state of her back, I have come to some realizations as well. When I first saw Makenna's x-ray in March of 2010 that read zero, I held that as the benchmark. But that's not a normal average in the general popluation... That may not hold, basically. Makenna's last x-ray in November read about 12 degrees. 'Do I freak out? Or do I look at the fact that 12 degrees is not that big of a deal?
At first, I freaked out. But here's what I have come to accept. 12 is pretty good. 12 is functional. 12 does not comprimes the function of her organs. 12 does not alter her motor abilty. 12's not that bad. Now, we'll see what they x-ray in May says. If it's progressed past 12.... well, then I don't know. But if it's still at 12? Well, then maybe that's where her body feels balanced. Maybe that's her stable normal.
I won't know until we get there. And even then, I am sure I won't have all the questions prepared for each scenario...
And, now, here we are. 4 days from our next appointment. I'm pretty impressed that I didn't call and ask to have the appointment pushed up (I'd have lost money on that bet!). So the impending fact is this:
I don't know what it is, but it's not 12. We'll have answers on Friday. And probably many more questions.
For now, I've got lots of different scenarios to prepare for; but I'm guessing "good to go" isn't one of them:(
We haven't won yet, but we're not done fighting.