I am struggling. That's the simplest way I can put it. I am sad and worried and trying so hard to stay positive.
Lily had an orthopedist appointment the other day. Dave took her. She goes for scoliosis and kyphosis. Because of the scoliosis (and I guess the kyphosis, too), Lily has to wear what is called a TLSO--basically, a back brace. The hope is that the back brace will keep Lily's scoliosis from getting worse.
Unfortunately, it is getting worse. And that is not a good thing. According to the doctor, she will need surgery. I'm not sure exactly when that will happen, but when the doctor told Dave that he doesn't want her in the hospital this winter, it makes me think that he's talking soon.
T-18 mommies are telling me that for her to have surgery at 5 is too early. A nurse who used to work for this doctor is telling me to trust him--that he's well-known throughout the nation for his work with scoliosis, and he knows what he's doing. I'm reading/hearing that this surgery will change things. For instance, this nurse told me that we'd have to pick Lily up differently. I read online that a child who undergoes this surgery would have to relearn how to get out of bed so as not to damage what was surgically done. What's going on in my mind with that? How are we supposed to teach that to Lily? She's an active little girl! She's mobile! She's awake in her crib and pulling up on the railing so that she's on her knees. How do we keep her stationary--heck, how do we keep her moving in the right way--when we are asleep? Even when we are awake?
I wish I could say that was the worst of my worries. I worry about the surgery itself. This seems to be pretty major surgery to me. I worry about her life after the surgery. It will be different. Will she bounce back? Will she be in pain? (I've read that children who receive this surgery experience more pain than older kids.)
I mean, will her personality change? She's such a happy little girl. I'm terrified of losing that. And she's come so far. I understand having to relearn after surgery, but does she have it in her when life for her now is quite liberating.
Dave reminds me how fortunate we are to have Lily now. We've had five years we never thought we'd have. I know that. But that still doesn't change one simple thing. She's my little girl. And because of that simple fact, I do not want her to be in pain. I do not want her to lose her spark. I do not want to lose her.
She's still a little girl--a kindergartener. She smiles, she laughs, she plays. She can't run around, but she moves. And she knows joy. Probably better than you or I. I am just so afraid of losing all of that.
So, I don't ask often--at least, I don't think I do--, but please pray. Whether it be for healing or our peace, for time or acceptance. Please pray.
I'll leave you with two videos. One is from the fair. We were very close to the fireworks. This is Lily's reaction. The other was taken at school. I believe this is the first time Lily stood up by pushing herself up.
