Friday, April 15, 2016


Well it had to end sometime. Ugh. Bad day. Reagan woke up at 4am crying. I gave her some medicine and moved her to her chair and she did thankfully fall back to sleep. However, the rest of the day we were not so lucky. It's been an awful day for my girl. This morning started off OK, it almost seemed like she might be alright, just a little whiny. But then it kicked in and she was MISERABLE. Poor thing. Medicines really didn't seem to help...not even an increased dose of oxycodone per the palliative care dr. Twice she fell asleep after clonidine, but both times it took about an hour to work and it was after she had already cried her lungs out (and only lasted about an hour). No clue what it is hurting her. There are no clear signs pointing in any direction. The only thing that is crystal clear...this is definitely a bad day. I'm really hoping she can pull out of this quickly as this Sunday is the UMDF walkathon in Houston (we're driving down and back the same day). Our team and fund raising is sadly dwindling a bit this year; it's on a Sunday which interferes with church so that's not helping! It's also supposed to rain all weekend (and week) but the walk will go on rain or shine! The UMDF has done so much for mitochondrial disease research, I feel it's our duty to try to help them out! Please, if you'd like to donate in honor of Reagan, you can follow this link to our fundraising page. This is a horrendous, UNCURABLE disease...but through research we can change that! There is hope! I refuse to give up on that. My girl deserves so much more. Please pray for her, that she'll recover quickly and that she'll sleep tonight! Please sleep tonight...

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