Last week when we went for Makenna's brace, we were told that the x-ray from July was really at 14 degrees. We thought it was 8. So, reality is almost double than what we thought.... and less than half of where we started. My mind has been running in circles since then.
When I first saw the curve in Makenna's back two years ago, I had no idea what I needed to be prepared for. I used to think scoliosis was a simple curve in your spine ~ I have a small s-shaped curve in my back. People just have scoliosis, right? And it's no big deal. I had no idea that when I saw that curve it would send us on this rollercoaster of a ride. I had no idea that scoliosis could be progressive. That at it's worst it can cause pulmonary and possible heart issues as the ribs press against the lungs. No idea.
With the underlying diagnosis of Horizontal Gaze Palsy with Progressive Scoliosis where the only reported characteristic of the progression of scoliosis is RESISTANT to treatment... I have to hope for the best but be prepared for the worst. I can't deny it. I can't just say it won't happen because I don't want it to. And just typing the words - - - prepare for the worst, brings tears to my eyes. It's like admitting defeat. And I hate to lose!
So, I feel like I have to fight. LIke I should be saying.... "Excuse me while I beat the odds"... And I am fighting. And will continue to fight. But the problem is... sometimes I feel like we are the only ones willing to fight. And that voice in the back of my head just keeps screaming, "Why is this happening to my baby? Because I just can't take it anymore..." Then the frustration sets in.
I've often told the girls at the gym that frustration is one of thetrickiest emotions we have. More often than not it's unproductive ~ but it can also be the most useful. Typicaly when we are frutrated we just dig a hole in one spot - make no progress, answer no questions, solve no problems - just make a big mess as we frantically dig to the bottom of the earth. That's what I've been doing for the past month. I dig a hole. I sit and I think about how bad it could be. About the fact that Makenna's curve has 're-appeared'. About the fact that I have ZERO control over the progression of her curve. Or the fact that maybe if we try everything possible and exhaust every option; it just might not be enough.
..... so now I try to follow my own advice.... Frustration is only useful if you can turn it into motivation. And that takes practice and it takes sitting down and really thinking about the things you have control over and the things you don't.
"What's your problem?" and "What are you going to do about it?" Those are the two questions that I tell the girls they need to be able to answer when they are frustrated and feel like they've hit a wall....
So, what's my problem?
I feel like my daughter is going to fall through the cracks. That physicians seem OK with 'good enough' or 'better than most' ~ and that's simply not good enough. That her curve is going to progress rapidly fast. Faster than anyone is prepared for. I am terrified that we will go back for her check-up and it will be greater than where we started in the first place....
And what am I going to do about it?
Well, I'm not entirely sure yet. Here's what I've done so far....
* I completely freaked out and ranted and vented to my other cast mom friends. They are my lifeline and just 'get it'. They understand the deepest, darkest places that this roller coaster can travel. The uncertainty. The lack of control. The advocacy needed.
* I have e-mailed her doctor's nurse to ask the questions thay my brain couldn't process the other day....
If the curve is 14 in the brace, is it more out of brace?
When do we discuss re-casting?
* I've set up a second opinion appointment with her old doctor. I am holding out hope that it was just a bad x-ray. But if it wasn't... I need something more than waiting and seeing how quickly the curve will continue to progress.
* I've e-mailed the orthopedic doctor/researcher in Turkey who has seen the most cases of HGPPS patients. I've asked again about his research and also put out there that if he's ever in the States for anything, we'd be willing to come meet him.
* I've set up sessions with my friend and co-worker... she is going to work with Makenna on vestibular/balance/symmetry training. I was so happy after our session last week... and I feel like it's going to be great :) I am excited about the progress she can make.
So... even though I have those action plans in place and I am trying to be proactive and on top of it... I just can't shake the feeling of defeat. I offically feel like I am fighting a losing battle ~ but I will continue to fight.