|Nothing like a morning nap with my Milla. Soul - filled back up.|
Thursday, February 11, 2016
Feelin' the Love
Just a quick update for the week -
I had 2 of my oldest and dearest friends come visit me last weekend. And it was so wonderful. My soul got filled back up. :)
And then Elle decided to flood the kitchen Sunday (we have hardwood floors in there) and my soul might have emptied out just a bit again. Sigh.
We had a good appointment with the girls' neurologist last Friday and we decided to change a couple of things.
For Elle, we are trying to remove any medicine she doesn't absolutely need because she is resisting taking her medications. A lot. So we were able to take away the one for her appetite, since it doesn't seem to be working anyway. And we tried to take away the melatonin (for helping her fall asleep) but that was a complete disaster so we put her right back on that.
But all in all, she's actually been better about taking her meds this week. Pray that this continues. Because bottomline, if she refuses to take her meds, our only other option is a G-tube. And we are certainly not ready for that yet.
Elle's had a couple of good days and a few bad days this week with her seizure-like activity. But because most of it is probably not seizures, but brain degeneration, we aren't changing any of her seizure medications at this time. Although, she has had more of the drop seizures, so we might be headed in that direction.
Milla has been about the same with lots of tremors and some bad nights crying off and on. But we increased one of her seizure meds, hoping it will help with the tremors and decreased another seizure med to counteract any side effects like tiredness, etc.
The good news is that her tremors are better and she's not been crying the last couple of nights! The bad news is that I've noticed she's a bit more tired (during the day) lately. Hopefully this will all balance out though after a few more days. We will see.
It's always science mixed with art with all these medications. You want to find that balance between giving the girls quality of life, but not making them zombies. And that fine balance is constantly changing as their conditions change. Please pray we are balancing well!
Oh and a quick note about Ann Carlyle - she is liking the new food that y'all are bringing! The new menu plan is working! Already she is feeling more in control of her dinner because she is able to anticipate what these things will taste like. And that has led to dinner-time being less of a battlefield. Hallelujah. So thank all you meal-bringers again for sticking to these recipes...you are contributing greatly to our quality of life!
That's about it, I think!
Happy Thursday to all and Happy Valentines Day in advance! I'm certainly feeling the love - so thank you!! :)