Friday, September 19, 2014

Mitochondrial Disease Awareness Week

OK, so I'm a little late with my Mitochondrial Awareness Week post, seeing how the week is almost over! But better late than never, right?!?! Actually, I want to share a beautiful video that Jack's sister, Senna, made for her brother to help raise awareness! I posted this on Facebook, but for those of you not on Facebook, or those of you who haven't watched it yet, please take the time to watch it now! You won't regret it! It's far better than anything I could have come up with myself. There's also a little cameo of Reagan (along with many other kiddos fighting mito)!  I just want people to realize what we're going through. What our kids go through on a daily basis. What we're battling. You have to know the enemy to fight it!  We're getting together a team for the Central Texas UMDF Energy for Life Walkathon! If you are in the area, please consider joining us team Rallying for Reagan on October 19th at 1pm! This is not just about raising's about raising awareness! These kiddos deserve a chance! They deserve a CURE!

It's been a rough day for my girl. She slept well last night. Like a log, really, but in her chair. So this morning we got brave and decided to try to move her to her bed. Did NOT go well! She woke up and it was downhill from there. When awake today, she's been crying nonstop! Thankfully, the majority of the day she has responded really well to medication and we've been able to get her to fall back to sleep fairly quickly. Tonight she did wake up and clonidine did not work to get her back to sleep. She was clearly agitated and very tense, but not crying. Eventually, she dozed back off on her own. We are not even going to attempt to move her! Hopefully she'll sleep the night through and wake up feeling better tomorrow! 


Katie said...

That Is a beautiful video.

Clarissa said...

wow! *sniff* :'(

Praying for Reagan as always!