Friday, November 2, 2012

Update from Scoli Clinic

Unfortunately I heard what I knew I would hear.
Lily went from 23 degrees to 45.
We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.
Got rx to go back to wheelchair clinic, I called to schedule, but gal was out so I'll schedule that next week.
I just love this Dr. He is so wonderful and kind and caring.
He knew this was sad for me. Surgery is a definite, just not yet, but I'm sad. He said it is a neuro type of scoliosis and there isn't much to prevent it.
Her hip needs to be watched.
Her growing bigger is the enemy. This is so heart breaking on so many levels. We all say we don't want our kids to grow up, but when growing hinders the quality of your child's life, it is a whole different level.
I'd appreciate that pause button now.

{Sigh}

The lump in my throat is big and invading. I have a lot to do right now. I have no time for tears. Action only. Cruise control set.

Oliver's tonsils are due to come out on Monday at 9am. He has been sick all week with yet again another acute case of tonsillitis. These things need to go and throw them away. He has been miserable all week and will be again all next week, but then I pray he will be better for good.

Oh and moving. Got the keys. Got the house. I should be happier, but so.much.to.do.
I will smile and pop the champagne when I am finally relaxing in the new place.

Promise.

Keep us in your prayers please. I am stressed about a lot. I know I honor a good God and he will see us through all this, but the control freak in me is resisting his help.

Thanks friends for keeping up with us. Your comments mean so much to me, I love hearing I am not alone in this journey.


4 comments:

Anonymous said...

You are doing so well at everything. You do not need to be a pinterest mom, just continue being the fun, loving, and wonderful mom you are now. I will be thinking about you.

Kim C said...

My daughter, who also suffers from uncontrollable seizures, had spine surgery for scoliosis last year. We had been watching it for a while and it finally got to the point, just as she was turning 12, that the surgery needed to be done (she had an almost 90 degree curvature!). At first I was totally down about it, and the toll it would take on her, and how it was just ONE MORE THING that we needed to deal with, but then my dear husband reminded me that unlike the seizures, this was one thing that we *did* have control over and we *could* fix, and it would improve her quality of life. Try not to worry about it too much -- in the end, it will be OK.
Cheers, Kim

Amber said...

I don't have any helpful experience I can share as my daughter is not quite 2 and we're not there yet - but thank you for sharing your world with us. It is helpful to be able to mentally prepare for what the future might hold and, as you said, to feel less alone. I will keep thinking good thoughts for you and your girl.

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