We haven't given Ruby a steroid injection since Friday morning and she slept a total of 9 hours last night in her own crib!! Wow, it felt good to wake up to a rested baby. Thursday we met with her neurologist and he seemed pleased with how she was doing. We are going to do another EEG in a few weeks to make sure she isn't having seizures off the ACTH. He wanted to keep her on both of her meds (Depakote and Vigabatrin) for a few months and then if she is still seizure free in Oct, he will probably start weaning her from the Vigabatrin. What will happen with her development remains to be seen, but we are hopeful. She is slowly returning to her old happy self these last few days.
We did the stroll for epilepsy on Saturday with my parents and Ruby and Charlie. It turned out to be a nice day and the walk by the river in downtown Grand Rapids was beautiful. There wasn't as many people there as I had thought there would be so next year you all will have to come out and join us so we can increase the numbers! Thanks to all of you that donated! I just found out about the walk on Tuesday and just by posting it on my blog we raised $455! Thanks so much for your generous support!
Our Father's Day celebration is at our house today. Happy Father's Day to my Dad and Dad in law, and for the first time Happy Father's Day to my husband! Mark- you are a fantastic Dad and I don't know how I would have managed this past year without you. Thanks for all you have done for our family these past several months. I appreciate you!
1 comment:
Yay for no steroids!!!! Wow, nine hours of sleep... way to go Ruby! :)
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