Wednesday, January 28, 2009

What a day! Froze in at home with the whole family. It is supposed to be a good thing to get to miss school and work and it was the worst day ever. I can't wait to go back to work and the kids are happy about going back to school. OH to find the patience for a 3 year old.

Little bit of good new on Ella
Wednesday, January 28, 2009

news from the geneticist...
Dr Kayser called and said they got some of the results back from the biopsies. He said the muscle tested perfectly normal and the liver was sick, which we knew, but the pathologist said that he couldn't appreciate the mitochondrial DNA depletion from the liver itself, and if he didn't know of the family history of this he would diagnose as galatosemia. They do test for this as newborns, but he said if it came back borderline, they may have thought nothing about it. So he is requesting her newborn screens from SJ tulsa and I am taking her to his office tomorrow for her weekly lab as well as the test for this. I am trying to take this as good news, I know that both the babies before were also tested for this and it turned out to be the other.. so I am undoubtly still wary to shed my fear.. if it is by chance the galactesemia, we are not sure yet if the liver could correct itself or if a transplant or other treatment may be necessary. It depends on the damage done.. So we are still waiting and praying and thinking positive thoughts. I love her so much and just want a miracle to happen and just wake up one morning and everything be perfect.. BUT as I have said before, we will do whatever it is that we need to do to get her better. as long as there is breath in my body, I'll never give up on her..good news on Ella!

2 comments:

  1. Your kids are growing up so fast. Love Nick in the cowboy hat. Heath is adorable, I'm going to torment him again this yr at the reunion & Miss Sarah, well, she just looks plain ole honry...but is a cutie pie as well. Don't blink T-baby cause they grow up faster than you will ever believe. I love you, thanks for all your prayers & keep them coming.

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  2. lol.. i was glad for work and school to resume too :) and yes, thank you so much for everything!

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