So it's been a busy week and an exhausting week, but we've made it through to the other side. I have to discipline myself to take it one day at a time so that I don't get too overwhelmed.
Milla has been mostly the same - although she has still had some of her more violent seizures here and there that throw her to the ground. And we are still seeing that the ketogenic diet seems to be making her seizures worse (certainly not better). She has been on the diet for 4 weeks now (her doctor told us we should see a change within 2-4 weeks). So we will see what his thoughts are this week...
Also this week, we travelled to Huntsville to get a second opinion from a specialist that was recommended by a neurologist friend of ours. The Huntsville neurologist was really great - very professional but personable too - and she was very helpful talking through some possibilities moving forward. She also confirmed that we were on the right path with Milla's doctor.
We were also enrolled in a genetics study that will look at some 20,000 genes in DNA from Milla, Frazer and me. We are hoping to find some answers to what is causing Milla to have these seizures and thereby figuring out how to control them.
So that's all I got today - I'm pretty wiped out - we can really feel the stress taking its toll on us these days.
Please pray for stamina and energy for us. We are in desperate need! Running on empty is taking on a whole new meaning.
Please continue pray for Milla's healing and safety.
Please join me in offering thanks to God for the mercies He shows us morning by morning and for the help He has provided through you all. We are so truly grateful.
Also, please pray for us as we make decisions related to our house. We are starting to look at houses that would be safer for our family. And so, we are also trying to figure out how to get our house ready to put on the market. The last thing we need is more stress(!), but we feel it is a necessary stress at this point. If anyone is looking to move to Midtown, let me know! I am boldly praying for God to miraculously and mercifully make selling, buying and moving easy for us to do. It would have to be a miracle, right?! (When I think about all that is involved with this, I want to find a happy place and rock back and forth. Again, needing to remind myself to take one day at a time, one step at a time.)
Oh - and too, please pray for a quick start for speech and occupational therapy for Milla. We have been on a waiting list for over 2 months now - but I contacted a different therapy group and once they review Milla's evaluations this week, they should be able to start the speech therapy right away. Please also pray that the appointment times they have available for her would not be on her PDO days as she needs that time to be around her peers. (And honestly, it's also somewhat necessary for me to have those days too!)
Much love to you and yours...and a restful Sunday to all! Thank you, too, for remaining so faithful in praying for us and helping us during this long season of life.
Dana
No comments:
Post a Comment