EmBracing our summer?

One month from today Kiya will be cast free and sporting a new TLSO brace. I am excited and terrified. She is confused.

Last night she asked me why she wasn't getting a new cast. Her direct quote "but mommy I always wear a cast."

She is right. For as long as she can remember she has worn a cast whether it was pink, green, blue and pink or blue and purple like her current selection. She got her first cast in September of 2010. Wow. We are almost 3 years in to this bumpy curvy road.

We have seen a lot of lows along the way and a few glimmers of hope and a whole lot of nothing new. Her curve took a big hit when she spent 2 1/2 months out of cast due to a gravel induced granuloma that took that long to heal. In September 2010 she was 52 degrees out of cast. When she got her second cast in January 2011 she was 64 degrees out of cast.

Cast 3 brought us down to 62 and cast 4 brought us up to 66 degrees out of cast. Then we finally got some long awaited good news between cast 5 and 6 she had gotten and held 20 degrees of correction. Hallelujah. It was finally working. We weren't putting our kid under general anesthesia every 12 weeks for nothing. The hope of these numbers kept me going. Kept hope and faith alive.

Then the day of cast 7 arrives. I was hopeful we would hear a number below 45 degrees. We heard no change. Sigh. Okay, no change is better than worse a wise woman told me. Cast day for casts, 8, 9 and 10 brought us the same news. No change.  Each time the doc is getting her down to 15 degrees or so in cast. I am frustrated. Her doctor is frustrated.

I couldn't face yet another summer of saying no to the swim lessons she so desperately wanted. I also felt we needed to build her strength. So after talking it over with other cast moms, my husband, our care coordinator and our doctor, we all agreed that Kiya could be cast free this summer. Brace break here we come.

She is excited that she can take swim lessons. I am in the process of getting her a private instructor. We are also going to do physical therapy and possibly dance. I plan on not wasting a second of this gift. That said I am terrified. What if her curve gets worse? What if it holds at 45?

I don't do well with the unknown. I want answers and there are no answers or quick fixes. Reality is and we have told Kiya this that she will spend 4k in a cast. She is already talking about what color she wants. She says this now but I wonder how a removable brace will affect her excitement over her next cast color....

Our doctor is willing to cast her as long as we want. The older she is getting the more she is not liking talking about her cast and others seeing her cast. She has been better about it lately but she has her moments. Kids are curious and sometimes cruel and I worry for her. She had one little boy in preschool ask about it and she walked away and said she didn't want to talk about it. Which I have told her is fine it is up to her what she wants to share. She can tell you she has a curvy back or sometimes she says she has scoliosis just like she can tell you she was adopted and was born in Ethiopia. Both stories are hers to share at the level she wants to share.

I am scared. I don't know what the future holds but I know for sure that the outcome of this brace break will tell us a lot. If her curve can hold it gives us hope that if and when we pull the plug on casting, her curve will hold so she can grow and get bigger before facing surgery. If her curve were to get worse, well than we cast and cast and cast until casting just won't work for her or us anymore and then depending on where we are she may face surgery at a younger age than I would like.

I had always hoped and prayed that major spine surgery/surgeries would never be in her future. Reality is hitting me hard that we may not be able to avoid it. She still has a severe curve even though it is 20 degrees better than it was at its worst. I pray daily that the 45 number will go down but it hasn't in a year so hope is hard to hold onto especially since her age works against her. She is still flexible so I hold onto that for now. It is getting hard though.

She is my baby girl that I waited 6 years for. She is my sunshine. She is my light. I want to protect her. I want to shield her. But this darn curvy back gets the best of me sometimes. She as always is a rock star and I know that no matter where this path takes us she will bounce back and be amazing.

Deep breaths and one day at a time as we both try to EmBrace this summer and enjoy every second without regard to what the future will hold. We can deal with the reality in August right?