Saturday, August 7, 2010


It's been another one of those days. And oddly enough it started fairly well...with Reagan sleeping through the night last night. She has been completely and totally miserable today. Whining, crying, and moaning all day long (and of course, we have no clue what's wrong with her). She's moving constantly, clawing at her arms, crunching herself in half. She's been so tense, her legs and her arms kept trembling. She really didn't have one good moment all day. It's been an excruciating day for all of us. Tonight I had to give her the clonidine at 8:30pm (way earlier than I normally would give it) just in an attempt to soothe her. So far she's still awake (not good) but at least she's not crying. Tonight I find myself feeling very disheartened. Why does Reagan have to go through this? This is no life. She's miserable. She has a couple good days sprinkled here and there but that's it. When she was having seizures I prayed and prayed and prayed for them to stop. If they would only stop, everything would get better. Well, that hasn't exactly been the case. Don't get me wrong, her seizures stopping was the single best thing that's ever happened to us (something I thank God for every single day)...but many problems still remain and other new things have popped up as well. The chorea. The chaotic movements that are obviously neurologic and often times so disruptive we actually have to hold Reagan down. The vomiting and nausea, for which there's no medication that helps. Her getting sick every week or so. She used to never get sick...we rarely ever went to the pediatrician's office (now we live there). We thought she'd take off developmentally...hasn't happened. We thought she'd sleep better...hasn't happened. And then the mitochondrial disease diagnosis...well most days I just ignore it. I don't even want to think about the long term consequences of it...because there is no long term. So in general I just take each day as it comes, but on days like today it's hard to even handle that. Please keep those prayers coming for my little one and for her frustrated parents...

1 comment:

Makenzies Miracle said...

Oh friend I am so very sorry! We are praying for Reagan! She is strong and just as she overcame the seizures she will come out of this too!

Tons of hugs and prayers!
Pam and Makenzie!