A three year journey so far...

Three years ago we heard the words scoliosis, MRI and surgery for the first time. It was scary. In reality it still is sometimes. That said we all have come a long way in these last 3 years and while our journey on this curvy path is far from over we have all learned a lot.

I think the thing that has floored me the most is how much I can learn from my child. Kiya truly is remarkable and nothing will stop her. She is determined and willing and a fighter. She is still innocent and doesn't think about things like potential surgery or surgeries. She takes one cast, one brace at a time and just rolls with it.

This summer we worked with her doctor to have her in a brace so she could build muscle strength and well be a kid for the first time in a long time. We have her in weekly swim lessons and weekly physical therapy and we do daily therapy exercises. That said she is allowed to play in water and enjoy her summer. It is amazing to see. She is so happy. Yet she also knows that come September she will get cast number 11 and while it saddens me she is sure she wants a pink one and is ready to go.

I started this post 2 months ago...here is where we are today.

Kiya is sporting cast 11 and it is pink with a stripe of purple. She was a trooper on cast day. She took her medicine. She listened and cooperated for the trimming and taping. She hasn't complained once that her cast is back on. Not even last night when Katie was in the bath tub. The bath tub they shared all summer long. Sure she was pretty mad when she first woke up but mom, her pillow pet and some kit kat bars made that all better.

This cast day was smooth and I was blessed to have a dear dear friend come and sit with me. I needed the shoulder to cry on and the laughs and just to be with someone facing a complicated journey as well.

Kiya's curve got worse over the summer in her brace. Her curve measured 60 degrees out of cast and after her cast was on the curve measured at 30 degrees. This was not good news. We are basically back to the beginning only her spine isn't nearly as flexible as it used to be. In the 10 previous casts, her spine was being held at less than 20 degrees in the cast. Her doctor fears her spine is becoming stiff. He would like to do one or two more casts and then discuss growing rod surgery.

Reality is I knew this was coming. I have seen it coming for awhile but it always seemed so distant. It may not be so distant anymore. We just don't know. We are holding on to hope and prayer that God will allow her spine to hold even some little bit of correction. I don't want my 5 year old to have surgery, not yet.

For now we are going to continue physical therapy, she will get an hour and a half of therapy a week with the school district and then some exercises at home. She will also have a half hour dance class once a week. Cast 12 will go on in early December just after her 5th birthday likely. A trip to the Dells will definitely be a birthday present. We will see what the xrays show then and move forward with cast 13 or start looking at plan B.

Kiya is a shining star and model patient. She impressed everyone at hospital and impresses me daily. She still asks to do her exercises. She chose an extra half hour of therapy today with her therapist instead of going home. Nothing slows her down and she finds a way to make everything work and she does it with a smile. I know that no matter what be it cast, brace, surgery or all of the above she will come through with flying colors and with a huge smile. She is a truly remarkable and stellar kid.

One day at a time. Deep breaths. Lots of prayers. God has a plan. I may not get it and I may not think it is fair but I know with God and our friends standing by our side we will tackle whatever path we need to on this curvy road we are on.