Sorry I have not posted for a couple of days, we were pretty behind for Christmas. Lauren was able to come home from the hospital Wednesday night. We were so happy to be able to be home for Christmas!
The plan right now is to wait and see how she handles the new drug felbatol. We had to stop depakote cold turkey because of the high risks of the new drug on the liver and bone marrow. Depakote also effects those areas, although not as bad. They also wanted to see if the IVIG did anything to help, we will probably do it again in 1 month. Primary Children's couldn't get a hold of our Dr at the Cleavland Clinic until Wednesday so when they did she pretty much agreed with what had already happened and to wait and see.
Right now Lauren is doing okay during the day, her nights are filled with lots of seizure activity. She is loving not being on the keto diet anymore. I don' t think the reality has sunk in for me. No more measuring, preparing, and forcing her to eat! Almost 2 years of doing this it almost seems to weird not always worrying about what she might be getting into.
Thank you for all the support and prayers it has strengthened us so much. I hope everyone had a wonderful Christmas.
Lauren
1 comment:
I'm glad Tuxhorn agreed with what had been done and you could go home on Wed!
When Naomi was sick I thought I'd just give her some banana because that was all she had kept down the day before. I cut off a piece and couldn't make myself just give it to her! I weighed it first! She's been on the diet over a year and it would seem weird not to have to weigh something. But I wouldn't complain about being able to go out to eat and just order her something off the menu! She used to love pancakes!
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