Tomorrow, Abby has two appointments at CHOP. We will see plastics first, then orthopedics. If all goes well and her wound is officially cleared, we will get her next surgery date to put the VEPTR rod back in. We are hopeful that this will be sooner than later!! We would appreciate your prayers for wisdom of our surgical team, as this surgery will be even more complicated than usual. The combination of Abby’s lung failure, scar tissue, and kyphosis make this surgery a challenge and we are very thankful that Dr. Campbell is willing to do it. He doesn’t give up on kids and for that, we are so grateful.
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 ...
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