Not much has changed with Elle until really the last week or so. We are still working to control her seizures. We started another new medication about a month ago after trying 2 others that failed horribly. We have to slowly increase (or decrease) the doses of these medications and currently we are still increasing the newest one. I will say that for the first time in a long time, we may be seeing some consistent improvement in her seizure frequency and without the dreaded behavior problems that usually come along with seizure meds. She is still having some hard and long drop seizures but we are seeing less of them! And her mood has been mostly good! She has been more giggly and happy and she is having a bit of an easier time with transitions. AND slowly but surely, her falling-asleep patterns have gotten so much better! Her overall sleep is still awful but she is not restless and thrashing and moaning for 45 minutes as she is trying to go to sleep. She typically will fall asleep on me and I'll hold her for awhile and then put her in her bed.
So for now, we have seemed to solve the going-to-sleep problem...now if we could just get her to stay asleep...
The only good thing about her sleep pattern is that there is actually a bit of a pattern to it. Milla never, ever had a pattern to her sleep (other than it was bad) and Elle hasn't either until the last couple of months. So at least we pretty much know what to expect. We still don't have a night nurse for 4 nights every week and that has been absolutely brutal. Please continue to pray that the staffing company finds someone soon to fill this spot. (On a positive note, the night nurse we have for the other 3 nights is absolutely wonderful - she is fun and full of energy and Elle loves her. :) We pray that she will be able to stay with us for a long, long time.)
We are so thankful to finally be seeing these little bits of (good) change in Elle's condition as she has been on a downward spiral since mid-December. Her little body has been suffering so much.
April brings lots of rain and lots of birthdays around here! Ann Carlyle turned 9 earlier this month and Elle turned 6 last week! Both had wonderful parties to celebrate their sweet lives and they both had a blast (even though Elle's party was rained out) - and lots and lots and lots of treats as the whole month has pretty much been a birthday celebration! As so many have said before and I continue to see in my life, the days are long but the years are certainly short.
Note: I started this update this morning and then stepped away from it until late this afternoon. And Elle's seizures were worse today again. So we will see how she does tomorrow. And we will be thankful for the few good days she had this week.
So that's about all I have for now.
Oh - please don't forget to sign up for the Miles for Milla's House Bike Race! It is May 19th at 10am and you can even walk/run if you want to - that's what I'll be doing! Go to http://miles4milla.org to sign up or donate. (There's also information about Milla's House on the website.)
Much love to you all! God's mercies never fail. I read this quote from Joni Eareckson Tada recently...
"The weaker I am, the harder I must lean on God's grace; the harder I lean on Him, the stronger I discover Him to be, and the bolder my testimony to His grace."
God is good - on good seizure days and on bad seizure days. God was good even when Milla died and He remains good as we continue to grieve. God is good when we get to sleep and when we don't get to sleep. He remembers that we are but dust and will hold us together despite our frailties. Thank God my circumstances don't change Him.
-Dana
