"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Friday, January 20, 2012

Depakote Levels Still High... Iron Also

Luella had more labs drawn on Tuesday. The depakote didn't go down too much, it's still at 167. We dropped her morning dose down to one capsule now. We'll see how she does the next week. Jim had also asked that we have Luella's ferritin (iron) levels checked. Luella's iron was lower during the summer and our Mayo doctor advised us to start Luella on an Iron supplement. Her levels increased some on the supplement but were pretty steady. On Tuesday her ferritin was at 287, normal is 5-204!! So... Miss Luella is throwing us some curve balls! Not sure why that would increase so much either. We stopped her supplement for now. I did some googling... too much iron can cause fatigue, among other things, but that might also be playing into all of this!

On the plus side Luella has had a couple nights of better sleep. We got the weighted blanket this week. I don't think that is directly related but it might be helping some. The blanket is nice. I told Jim I wanted one. It weighs five pounds. It is quilted and has little pellets sewn into the squares. When I washed it I took it out of the dryer and covered up on the couch - VERY cozy! Luella's naps have also shortened some. When she is awake she doesn't ask to go to sleep as much either.

Eating is still a battle. She does have some days that she will eat something - but it's usually something weird. At a couple meals this week she would only eat butter - Smart Balance Light, actually, but gobs of it!! So gross to watch but she needs calories and fat somehow! Today all she ate was pretzels from Chex Mix at lunch. When she does eat it's usually once during the day. I can offer her the same thing she ate earlier and she won't touch it then! She's lost a pound so far. We are just trying to not drop any more!

I think her balance has gotten a little better. It's hard to say for sure when I see her every day. But thinking back to two weeks ago and her not even able to stand still to play at her kitchen, she has improved quite a bit. Still stumbling some when she walks though.

We have much to be thankful for! All the prayers are greatly appreciated!!

A video of Luella eating butter!

1 comment:

  1. I used to eat sugar and butter sandwiches when I was her age. Yum! She's so sweet. I'm sure her food selections will improve. Toddlers, in general, can be picky about what they eat. - LKA