Yesterday was not the best of days. We were at Shriner's hospital for cast number 8. We were hoping and praying to hear some good news and instead this momma heard the one word she never really wanted to hear or face. Surgery.
Yup. The doc said it. I am over processing it and really really need to talk to our care coordinator Linda who is on vacation until Monday. He isn't talking surgery right away but down the line. How long is that line, I have no idea.
Kiya was about the same 45 degrees out of cast and 15-20 in cast. He would prefer much better for a child approaching 4. He thinks that a brace will not be a good option for her at anytime and that when the time for casting to end comes, it will mean growth rod surgery.
I prayed and prayed we would never have to cross that bridge. Back surgery is seriously intense and recovery is tough especially for an active child. Then there is the timing. She won't have surgery for hopefully another couple of years but then there is school. Do you schedule surgery over winter break and hope she can tolerate going to school after that? Do you schedule it in the summer in essence meaning you have no summer so as to not interfere with school?
All these things are running through my head. That and the notion that she has gotten better. Her numbers went down the two casts prior to this last one. Is the doc just being doom and gloom? She is still flexible and still young with lots of growing to do. Another reason to talk to Linda. I need her to be my sounding board on this one.
We can do cast so the doc said let's keep on going so that is what we are going to do. Kiya does well in cast and there have been no adverse reactions to the anesthesia. The doctor doesn't want to limit her overall gross motor development with the cast so he is thinking long term about how a cast will affect her in school etc and that she was such a late walker.
Then I think, well if she isn't getting any worse and we are still praying she will get better, can I take a one month brace break next summer? Can I let her be a kid and take the swim lessons she so desperately wants? Can I let her have the best month of water play with her little sister? Will her doctor say it is okay? Yet another reason I need Linda. Next summer would be the third summer in cast and it just plain stinks to have to say no to your child who just wants to go swimming or run in the sprinklers when it is 95 degrees out.
Swimming can help her build those muscles that she is so desperately lacking but am I being selfish? I don't want to do anything to take away from the ground we have gained but if she is ultimately going to have surgery then can't she for one month just be a kid?
The saving grace of the day was Kiya. She was truly on her best behavior and a total rock star. In true Kiya fashion she dictated the entire taping and padding process. She insisted on where and what tape we used and who should put tape where. She was just plain awesome. Taping, trimming and padding last time was a DISASTER. This time it was a piece of cake. So grateful to Sandi and Kathy and Gwen for doing such a great job yesterday.
Lastly, I couldn't and wouldn't have survived the day without Catie and Sarah. We just can't do cast day alone and I am so glad they were there. We are in this with them for the long haul. We can't wait to see William EmBrace his new journey and we will be there when sweet Giana has surgery as I know they will both be there for us whether we get to brace or whether we have surgery. I have amazing friends on this journey and I thank God every day for them. Not sure where I would be without out my Lucky Cast Club family. Once I talked to the doc, the first people I texted were Catie, Sarah, Kelli and Chrissy. They were and are my rock.
So for now we are trying to keep the faith. It is hard. I have cried a lot thinking about what the future of multiple back surgeries may look like for sweet Kiya and how it is just plain unfair. But I refuse to throw in the towel. I refuse to give up. She is doing great and I will keep on casting and praying and casting and praying until we hit the fork in the road.
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