Saturday, February 8, 2014

Sweet girl, sad news

Reagan was very restless in going down last night. Thankfully she eventually settled down (she was getting so vocal we really thought she was about to freak out) and she slept fairly well. Of course both she and her brother were up early again this morning (because who needs to sleep in on the weekends anyway)! She's had a good day again today! She woke smiling and she's been a sweet girl. She, of course, was very happy to see Grandma...and so was Ryan (who was also happy to see Grandma's dog)! We tried the eyegaze device today but Reagan was not at all into it. She didn't even want to look up at all! We did go for a nice little walk, since it was nice and sunny and the temp got up into the 60's. All in all, it's been a good day for my girl. She's was a little kooky at times, easily excited and not a huge fan of us talking, but so so smiley! Unfortunately I don't have all good news today. I saw a post on Lucy's blog this afternoon that simply said, "I am in disbelief, but it's time to say good-bye…" and then heard on Facebook that she did in fact pass away at 7:30pm tonight.Just  short of her 6th birthday. My heart breaks for this family and this hammers home once again how desperately we need a CURE for this devastating disease. Please keep Lucy's family in your prayers! 




4 comments:

Jenny said...

I've been a long time Lucy blog follower but I can't find their Facebook

Reagan Leigh said...

As far as I know, they aren't on Facebook. Karen Owens (Gavin Owens mom) shared the Chronically Cool Families status asking people to pray for Lucy's family! So sad!

Jenny said...

It is terrible I couldn't believe it, and then I saw their blog post this morning. I cannot imagine the pain

Clarissa said...

I saw on her blog too... very sad for Lucy's family... it sucks every time a baby dies from mito! Totally not fair and I am praying for them all! Praying for Reagan today too! God bless!