Jolianne's Room
In her bed
Close up in her bed. They gave her a hand made hat. But she pulled it off.
They moved her IV from her head to her arm. Daddy feels much better about that. Still receiving oxygen my mouth to help with her Pulmonary Stinosis. She can breathe on her own but they are trying to make things as easy on her as possible.
Today's update is that Jolianne is stable. She does have anemia. She had a blood transfusion today and they will be monitoring her blood count to be sure she is OK. They did an echo cardiogram this morning and they should know the results of that this evening. She has been diagnosed as having Tetralogy of Fallot. They have submitted a genetics test to see if she has DiGeorge Syndrome. She is showing a few signs that are associated with DiGeorge. Tetralogy of Fallot, low set ears and low calcium levels. If you look up information about DiGeorge it can be a little overwhelming and scary. I urge you to keep in mind that each child's case of DiGeorge is unique. Not all children will present with all of the tell tell signs. Some children have very severe handicaps and some have very little trouble. In the research that I have done I usually find more negative than positive. We just have to take one day at a time. Jeremy and I have complete faith in God that He will keep our little girl in His very capable hands. She is a fighter and will have a long road ahead of her that may be difficult. Please continue to keep her in your prayers.
I will update again when I find out more information.
Crystal
3 comments:
Crystal,
I will continue to keep her in my prayers. I think it is so neat that you have a computer blog opportunity to write about her everyday. I wrote everyday while Christopher was in the hospital but wasn't able to use it as an update system for everyone like you can! Your posts about her are very informative. I love you Sis :O)
Kim
Crystal,
I've been following your story (and "Little Tater Jo" which is the cutest little nickname ever!) on Christopher's blog.
We are thinking of and praying for your sweet baby girl and you... I know it's a scary road... and thankfully, you have an amazing support system in your wonderful family.
Hugs to you... rest while you can... and enjoy your sweet baby girl.
Crystal and Family,
I will keep Jolianne in my thoughts and prayers. She reminds me of my oldest who was also born 8 weeks early. She is 2 oz bigger then him, I hope things continue to go well and you get some more answers soon.
Hugs,
Crystal and Eva
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