Mostly I wanted to update everyone on how K is doing with her brace. I think, in a word, amazing. There have been and continue to be obstacles but she is AMAZING. I would estimate that she wears the brace anywhere from 16-20 hours per day. She has been sleeping all night in it (12 hours) for a week now. She doesn’t complain about putting it on anymore, but you can tell, she’s happy when it comes off.
Negatives: cuddling is just not the same. Holding her is hard, awkward. If she trips slightly, she falls big time. She can’t quite catch herself. Her motor planning has been off, she has had to relearn how to move basically. Her center has changed, of course it was skewed from the scoliosis and we’re attempting to correct that but her body has to realign. Rolling over is no longer a simple task. It never really has been for Kierra anyways. Let me briefly say that we still applaud her when she stands up by herself or bends down and picks something up without falling, or sits properly and that was all before the brace. Physical activities and milestones are more difficult for Kierra. Hypotonia and hypermobility make everyday activities like pulling yourself up from a sitting position, much more difficult. The brace only adds to her challenge. It will make her stronger in some ways, definitely. But it also inhibits her core from strengthening, which is why it does come off sometimes. Her appetite seems off since the start of brace life, I constantly worry about her weight. Unfortunately, thinness is a marfan trait. The brace cannot be worn in the carseat, I don’t know if that’s just a Kierra thing or what but she cries and complains in the carseat with it on and since she doesn’t mind it otherwise, I know it must be painful. When we go somewhere, brace off, get in carseat, arrive at destination, out of carseat, brace strapped on. It is tedious to say the least. Then there is diapering…. ugh. Through several trials and errors, we’ve figured out what works for us but shooo. Not easy. It has been an adjustment. Another thing to lug around. Plus her ankle braces. 😐
Positives: we hope it is correcting, or at the least, holding her double curves.
I think to myself everyday how much I hate and am simultaneously grateful for the brace. It’s hard to explain. I see the now and how it’s making life a bit more difficult for Kierra and us too, if I’m honest. But if I squint real hard, I hope what I’m seeing is a future without scoliosis and that this brace was the first step to that future.
Kierra is so resilient. She still smiles just as big. She laughs unchecked. She loves….oh she loves. And we love her. Every single day I think I couldn’t possibly love her more and every single day, she proves me wrong. Not only does she have my love but my admiration. I admire her. I wish I were as tough. She is incredibly strong in so many ways. She is fierce, nothing is getting her down.
Side note: I actually questioned why Christopher and I have been so passionate about teaching sign language to Kierra, we want her to be fluent. Why has it been ingrained into our minds/hearts to pursue it so diligently? Well I feel like God shined down from the heavens when I recently learned that the heart surgery Kierra will have to have one day (the near future), will most likely paralyze her vocal cords for as long as 1 month after surgery. Now you tell me how much more awful it would be for a small child to not be able to communicate after something like that. For a month!!!! I cannot imagine and when I learned this, I cried a few tears of joy because I felt so good we are teaching her sign language. It’s renewed my fervor for it. We’ve taught her many important signs like medicine and hurt or ‘boo-boo’, sick, sad, want, help, etc. And she uses them all appropriately. She tells us when she’s tired or signs when it’s time for medicine. That was such a blessing to my soul. Just wanted to share. ❤