Monday, September 17, 2012

Mitochondrdial Awareness Week

Reagan slept fairly well again last night. She was awake around 5am, but she went back to sleep and slept til 8am. She woke up a little startled. Big eyes, no smiles. She cheered up though and was smiling for Daddy after a little while. She was good all morning. We went and had breakfast at Kerby Lane before leaving Austin. I love this place! Ryan was a turkey and fussed nearly the whole time. My dad was feeding him pancakes (his first bit of solid food) and Mike was letting him drink water out of his cup, just to try to calm him down. He is certainly a handful. He was tired when we loaded up into the car, but he resisted sleep and fussed and cried for a while until finally falling asleep! He slept for two hours or so on our drive back (the longest he's ever slept in a car). Reagan was a little spitty and kept coughing here and there, but thankfully she didn't wake him up. Unfortunately, Ryan woke crying again and nothing (including a lollipop) would calm him down. I kept telling Mike to pull over, but we were in the middle of no where so we kept driving. Eventually he settled back down (he kept giving me these awful looks) and then he fell back to sleep and slept the rest of the way home! Reagan was a doll the whole time and didn't fuss a bit until this afternoon. Ryan was fussing and then I got a call from the nursing agency...well, she did NOT like me talking on the phone! She was just about in tears! Not good. Not good at all. You can just tell she's tense. I'm not sure where this is heading, but I am sure glad we avoided this all weekend (especially considering how she was on Friday when we left)! Please keep her in your prayers and hopefully we'll continue on with this good streak! Lots of therapy and school to catch up on!


By the way...just wanted to let everyone know that this week is Mitochondrial Disease Awareness Week!

Just a few facts...
Every 15min a child is born who will develop mito by the age of 10. 
More children die from mitochondrial disease than childhood cancer!
Mito is not as rare as most people think!!

Please consider taking a moment and going to Chase Community Giving and vote for the United Mitochondrial Disease Foundation and help them raise some much needed money for mitochondrial disease research! (it's super fast and easy to do)

All week long California Pizza Kitchen is donating 20% of your bill to Mito Action if you bring this flyer in with you!

Below are some pics from the Central Texas Energy for Life Walkathon this weekend!








2 comments:

Laurie said...

That's so great Reagan's team was able to join the Central Texas Walk!

almudena said...

loved getting to meet you in person and love the pictures you posted. i'm so thankful that reagan has had a good time in round rock.