Abby is in the PICU for another night because she is getting her wound vac changed tomorrow and will be sedated. They want to make sure she is safe with the sedation. We've been hanging out and said goodbye to another roommate today. She's still not allowed to go anywhere and most of the playroom toys are locked up for the weekend, so it's been lots of tv time around here...not my favorite, but hopefully we will get some toys tomorrow from Child Life!
If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it ...
Comments