Annabel is doing better, getting stronger everyday. She goes to school most days and is able to basically stay all day. School is such a happy place for her and I am very blessed that she is so loved and well cared for by everyone.
She is getting back into all her therapies. I am also so lucky for her dedicated therapist who continue to work with us even though Annabel misses so many appointments due to her illnesses.
I ccontinue to have three great nurses, Rebekah, Debbie and Donna that makes sure she gets great medical care and so much love and attention. I feel guilty so much of the time that I have so much help, but Annabels needs have changed so much with this central line...
Central lines....what can I say? It fills my mind almost daily. My feelings are so strong that she must get off of this central line. The reality is that she cannot survive without it. So the very thing that sustains her, can so easily take her from us. It has been 18 months, 1 1/2 years of TPN/central lines. We thought this ride would be so brief, basically to rest her gut.
So just this past Thursday night when her fevers rose to 102 and she began to have chills, I froze. Mel looked at me and said you better go pack your bags. I really couldn't imagine going back to Houston and the thought of what Annabel has just gone through. Annabel was very congested and my prayer and wish is that the fevers were coming from the cold/congestion. So she made it until Friday morning and we went to see Dr. B. We did blood cultures and by yesterday we knew her blood was clear. Thank you, Jesus!
I will never stop praying for her tummy to work again, but the reality is she probably won't be able to eat enough to get the central line removed. Her liver continues to be sick. This will not improve as long as she is on the central line.
I have to keep my thoughts on the fact that we have so much to be thankful for with Annabel. She continues to show us how to live life. It is simple in her book. She wakes with a beautiful smile and a heart that overflows with goodness and love. If Annabel could speak I know that she would thank everyone from her family very close by and far away and all the friends who faithfully continue to pray for her from everywhere.