I just wanted to update everyone on how we're doing now since I haven't done that for awhile.
Things have found a groove of sorts I suppose. We have good days and bad, still trying to make the best of things. I've spent some time getting Marie set up with Easter Colorado Services. They're a government run program and basically they will help us with physical therapy, counselling, support etc. since we're so rural out here. It's funded by the Individuals with Disabilities Education Act which guarantees supports and services for children under three years of age which meet it's requirements. This is good, since I cannot find a good pediatric physical therapist out here. They have resources, they know where to find these people. I am happy, I need that help. Unfortunately, this has come with the realization that while I see Marie as a perfect, beautiful girl, the government and probably a large portion of the people we do not know see her as handicapped or disabled. This thought has been difficult to wrap my mind around.
Marie has been better with the vomiting, not every day anymore at least. She seems to have put on a few ounces, I hold my breath, I don't want to get my hopes up. Our appointment with the GI doctors is on January 16. She still smiles a lot, she's happy, and so easy going. She still sleeps in bed with us, but the upside to that is every morning I am greeted by her smile when I wake up. The downside is that she kicks.
We have had several alarming periods where she cries inconsolably. She gets stiff, arches back, throws her head back and screams. Her eyes are clamped shut and she breaks out into a sweat. It is horrible. All we can do is walk her and rock her and reassure her that we're right there. Often, when she calms again she will vomit... it sucks. We are really concerned by this and I've left message at the metabolic clinic with our "case worker" to see what can be done about this. It really seems as though there is pain with these episodes and I am worried about finding a way to help her. She seems to be a little weaker too, it's hard to hold her head up, and she struggles to sit while assisted without reclining. Still, she smiles, so to hell with the rest.
Josie is amazing. She is my sunshine. She really keeps us busy, and up, and doesn't allow for time to feel sorry for ourselves. She is also already looking forward to her birthday. I cannot believe my baby will be 4... her favorite things at the moment are princesses, reggae music, drawing, singing (there is forever a song being sung at our house)...
I think I forgot to post also, Marie got her 1st RSV shot on December 19. She will get one a month now until April. Insurance tells me as long as there is a medical necessity, they will cover the shot. We're praying for that...
Also, thank you to everyone who has put Marie on their prayer lists. I think she is on more than I realize... when I get down, this brings me a lot of comfort. That and I wrap her in that wonderful quilt from Aunt Peggy... I know that Marie has touched a lot of lives... much love- Shan