So quick update...
Elle had a rough start to the week. Last Tuesday, she screamed all.day.long. It was rough. She just wasn't feeling good and falling a lot and acting like she had just gotten off the tilt-a-whirl. She's also been getting up around 4/4:30am most days. So that is contributing to her feeling yucky as well. She's done a bit better over the weekend although yesterday, she tagged her eye and has a nice cut above and below her left eye. It's swollen and colorful but it's okay (in that we didn't have to take her in to get stitches or anything).
Milla is also doing better this weekend than she was last week. Much of the week, she was out-of-it and although she had some great bursts of energy, we can see her overall strength and alertness continue to diminish slowly. Also, her tremors were more exaggerated. We are expecting to get some wrist/hand braces in the next week or 2 to help with hand-positioning and possibly her tremors. She seems a bit more alert this weekend although she has had poor sleep off and on this week.
We are seeing some extra neediness and attitude from Ann Carlyle, which is hard because, for better or worse, we expect her to be more independent and obedient.
So while it was a rough week, things improved this weekend - probably because Nana and Granddad (my parents) were here! :)
We are hoping to get in for a checkup soon with the girls' neurologist - possibly this week.
Thank you to all who have bought the book (Voyage to the Star Kingdom) and for all your kind words!
And that about sums it up!
Much love!
Dana
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