While Milla is eating and drinking a little bit, she is not doing well at all. Her seizures are worse than ever - in frequency and in strength. Even if she doesn't fall, they are painful for her because they jerk her body so violently. And it is so bad that I simply cannot take care of all 3 girls by myself right now. We are not sure how to handle this.
We desperately need prayers for wisdom.
Although we are trying our hardest to stick to the modified diet, we are not able to do so right now. Like I said, the good news is she is eating and drinking. Just for a reference point, our goal for her carbs per day is 10-15g. At 3:00 Sunday afternoon, we are at 16g. Her fat content also needs to be ridiculously high to keep her ketones high, but her ketones are in the low range this afternoon - hence, more seizures.
There will be a transition period to get her diet right, but in the meantime, on top of trying to get her to eat differently, measuring out foods and calculating it all, she is having these dangerous seizures, continuously at times. (And then there's taking care of our other 2 little girls.)
Although she was having many, many seizures before, they were at least small and manageable and I could take care of everyone. We are, quite frankly, very worried and fearful right now and we are not sure which path to take to best care for Milla.
Again, please pray for wisdom and for peace and confidence with any decisions we make.
Please pray for safety. We live in an old Midtown house with steep stairs and other aspects to it that is not ideal for our family. We are trying to figure this out as well.
Please pray for Ann Carlyle and Elle as we are having to take away some of their favorite foods as well. Ann Carlyle has been really great about it so far, but it's hard. Milla's been pretty good about it too, relatively speaking, but I think that may be due to her not feeling very well. And it's only been 24 hours. Breakfast and after-nap snack are the hardest to manage so far...as those meals are typically the most carb heavy.
Also, I forgot to mention this yesterday, but Milla's MRI was not completely normal. Her brain has shown no growth in the last 6 months since her previous one. Typically, myoclonic seizures (even if someone has 200 every day) do not cause brain damage or delay. Milla's doctor is not really sure what to make of this right now. We are praying that the lack of brain growth is due to all her seizures and that once we get that under control, her brain will grow as it's supposed to do. We just don't know though. She will have another MRI in 6 months to see if there is any change. As you can imagine, our hearts are heavy with this news.
We are weary and stressed and unsure. I know Milla's Creator knows her brain and her body inside and out. I know that He is in control. I know He loves us beyond our wildest imaginations. We believe this and rest in this truth. There is nothing else.
So many of you have asked for practical ways to help us...we are so, so, so grateful for this. So many of you have already helped us in so many amazing ways...and even if it is 'just' prayer, it is powerful, not to be taken lightly. And we continue to need help, specifically to be another pair of hands and eyes during the week. If you have even just a little bit of time to do that, we would be most grateful!!! Just having another adult body here at the house would offer so much peace of mind and safety for Milla.
Thank you for caring for us - for loving us - for praying for us - for doing amazingly helpful things that I haven't even thought of! The kindness and service of friends, family and strangers alike is amazing and astounding. Much love to all of you...we know without a doubt the love of God because of you.
Dana
So sad to read of all of this and your weariness. Praying for you friend!
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