She's a little fidgety today. As I looked at her she keept moving her arms and legs in a jumping or stardeling motion. It makes me a little nervous - like she's in pain, not comfortable, or bothered by something. Her nurse gave her some medication to calm her down and I can't wait to see her tomorrow to see if it makes a difference.
She didn't have her Lumbar Puncture last night. For some reason her blood platelettes kept clotting and they couldn't get an active result....So they performed the procedure today. It wasn't the best news. Her spine was so full of blood from the brain bleed that it most likely will have to be done again in a few days to get an accurate reading. I don't like the need to put her through this again, and more disturbing...I am saddened by how much blood was in her spine. It's a constant reminder through all of this that her little brain has suffered tremendously. I just want to cry - for her, for me, for us...But, I haven't given up hope that she can still make it. I like to call her my little Corkey. Remember that show "Life goes on" with the family that had a son with down-syndrome? That's what I am hoping our little Charly can be. I want her so much to have some quality of life, to be able to be somewhat independent, thinking, moving, and doing. I so much want her to be my little "Corkey". People with disabilities, and brain injuries defy odds all the time - and why shouldn't my little Charly be any exception? I hope that whatever happens she will know how much we love her and how much we are going to fight for her to live a normal life...as normal as possible.
Charly also had another brain ultrasound today. It didn't show any new bleeding, but just confirmed what we already knew. The tech left a bunch of goop on her head and in her ear - so the nurse cleaned it off for me - she could tell I was bothered by it. It's so hard watching my little Charly get worked on. She's just so little and frail. At the same time - my desire to hold her in my arms is increasing each day. I know that someday I will be able to hold her little body in my arms and give her some sweet kisses.
For now, my goal is to take each day one at a time, remain optimistic, and to remember who is inside our "box". This is going to be a roller coaster ride...and it might be a long one.
she's moving and she's a fighter, hope she is just moving because she's anxious to get on with living - give her my love and tell her Aunt Jen can't wait to play with her some day - love ya, John and Jaxon - you're the best
ReplyDelete