Ella is still seizure-free, for twelve days now. And if that weren't enough, she started to roll over again in the last couple of days. We have come to learn that we must celebrate every smile and coo because it all is so hard-wrought and so precious. That she is rolling over again makes me wanna shout for joy. I can't even imagine what she'll do next--especially when she starts physical therapy and gets off some of these sedating, holding-her-back meds.
Here's what we are waiting for right now. A plan for physical therapy (may be as much as one to two weeks yet). A go-ahead to begin weaning the ACTH.
In the mean time, Ella is being seen by home health nurses twice a week; so far, they have determined that she continues to have normal blood pressures and that her weight has stabilized. Though fears that she might come to resemble the stay-puft marshmallow man are not completely allayed, it would seem that we might have dodged a bullet on this one for now (especially if she's soon moving on to lower dosages). She is also to be seen by the neurologist and the pediatrician on an alternating weekly basis--essentially in one doctor's office per week. She is fast approaching her 6-month check-up also, but I don't think they will give her any immunizations at present for both the recent seizures and most importantly the immunosuppression that would not jive especially with the "live-virus" vaccines that she'd otherwise receive.
My head is bobbing and my eyes are fighting to close, so I gotta end this. But I do have a topic for a prayer request real quick. Please pray that we will find favor in our final appeal process to have the ACTH covered by our insurance. Pray specifically for the insurance plan administrator at the bank where Chris works. Pray that our neurologist would be willing to write a letter demonstrating Ella's need for and improvement on ACTH.
And lastly, from the Hey-Megan-you-do-remember-that-you-have-other-children-to-blog-about,-right? department, I'd like to mention that Cooper had a great time at swim lessons last week and that Jackson is ROCKING his lessons this week. I really am not much on outdoorsy, bug-bitey, water-loggey, sunscreen-smelly activities in my old age, but, man, am I loving the swim time with my sweet boys!