Sunday, February 20, 2011

Needs More Rest??????

Today I purged and organized Garrett's medical information binder. I really do not need the orders for blood work from four years and 4 hospitals ago, or at least I need them archived, not being toted to each appointment we have. I re-read lots of information, and what I keep seeing over and over in Dr. Koenig's (mitochondrial disease specialist) information in letters for his medical team and his teachers and support staff is that mito patients need MORE REST because their bodies are not effectively producing energy. Garrett has been skipping naps for some time now. He has skipped over a month because of being out of his crib and the climbing out of it over and over and over during naptime while he was still using it. I have put him in our bed for three naps lately, and he fell asleep in about 3 minutes and slept almost two hours both times. I honestly cannot say I see improved behavior after naps, but I wonder if he is just always stalling out. Some mornings now he even comments on being "tired" just in the middle of the morning. Then again, not sure he means what he says. We have lots of conflicting statements comign from him now:
I love you...I don't like you.....I hate you....I don't like school...I like school....I want to go outside but then two seconds later NOT!!!! SO there's a communication issue too.
Tonight, Grouchy said, "You know, I think he hurts a lot. I think he feels bad most of the time."
Geez, what if this is the case?
What if my little guy lives in his own hell, his body and brain not able to receive what they, wait, that IS what Mito is.......whoa, bad sentence. Sorry Mom and DiDi!!
So we might run an experiment and try to get him to bed an hour or two earlier and reintroduce naps into our family life...I know I can use them..HA!!
Blessings to all and please say special prayers for precious Cooper Knight and his family tonight. Cooper is trying to make it home from the hospital to.....well, enjoy his last few days with his siblings. It just shouldn't have to be like this.

No comments:

Post a Comment