We are in Madison. It was a good day up until the last visitor to our room.We had seen all the people we needed to see for muscle clinic but this last one. The anticipation for this visitor makes you slightly temporally crazy just the waiting . This person is feared about as bad as the Grim Reaper to me. We have been good until now. Fighting against the inevitable, the dreaded spinal rod surgery. Those words make be cringe.I feel as though I was just stabbed in the heart and punched in the gut. Tears have been flowing down my face since the news from this surgeons asst this afternoon. I laid down with Lizzy a few hours ago and I just held her and silently cried while praying for another miracle to happen to my girl fast. I know........ get over it but you know I have worked so hard to keep Lizzy's back straight and keep her strong. This last huge growth spurt of hers caused this.
Any surgery is huge with kids with Type 1 then now facing the surgery a few months away I feel so darn helpless not being able to do anything to help her from getting this surgery.
Elizabeth said tonight to me." I am not getting surgery I am okay ..... just tell them to stop saying it. I am not because I am not doing it. " My heart just hurts for her. I just wish I could stop crying non stop.
Please put Lizzy in your prayers!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
www.our-sma-angels.com/elizabeth
4 comments:
Our hearts and thoughts are with you and Lizzy. I know this feeling, it's torture!! The only positive about this is that you really have the best medical team behind you. Give the girl a big hug from us!
Jeanna,
I am so sorry. But goodness, she is 7!!!! You have done a fabulous job!!!! and she has hit so many growth spurts, which doggoneit kids grow!!! You will be fine, she will do great, you will be in the best facility, and when it is all said and done she will probably grow 6 inches before Christmas and leave my boy in the dust!!!! Get some rest and we'll say some prayers!
Jennifer
I agree with Jennifer - while I know it's more than disappointing to know Lizzy still needs surgery after your meticulous care, you have done a fantastic job keeping her healthy and/or getting her healthy when things don't look so good. Sometimes, though, SMA just doesn't care what you've done RIGHT.
And as well as others do with the surgery, I don't think you need to waste any energy on how she'll do. She's as tough as her amazing grandma!!!
'Lucy'
Thank you all for your comments and caring so much!! ((( Hugs)))
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