The past 2 weeks we have been to lots of appointments. The results from the Whole Exome Genetic Sequencing test was that none of the genes they tested are causing the seizures. We are doing more genetic and metabolic testing. Her EEG showed no signs of seizures, so we can be 100% positive that she really has been seizure free for one year!
As of December 28, we have started the process of weaning her off of Onfi (the medicine she takes daily to stop the seizures.) It will take 12 weeks for her to be fully off of it. This is the only way to know if the medicine is stopping her seizures, or if she has "grown" out of them. So far, so good. No seizures! Please pray that she would continue to be seizure-free, and that we can get her completely off of the medicine. There is no telling all of the side effects that Onfi has on her, so the hope that she can be off of the medicine is really exciting. Pray that she continues to learn and keep talking!!!!
Claire had her first day of school today and was SUCH a big girl! She will go to school Mon-Thurs 8-10:30 am. I picked her up today and Ms.Curry said she did really well. She didn't cry when I left and fell right into the school routine. She was so excited when I picked her up and kept making sure she had her "Pack pack!"
".....I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for."
Jeremiah 29:11
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