When will we go home?

There's been some discussion about when we will go home. From an orthopedic and post-op standpoint, Abby is looking really good and we could go home today. What is hanging us up is her oxygen dependency. She is now pretty good off of oxygen while awake, but still needs it while sleeping. We tried keeping her off while she napped, but needed to put her on after a little while. They don't feel comfortable sending her home on oxygen if she didn't have an oxygen requirement in the past. We agree. While we are certainly capable of handling oxygen (this is nothing compared to a vent!), we really would like for her to be back to baseline.

Regardless, we will be getting an oxygen concentrator delivered to the house so that we will have oxygen for her as needed. We keep a few small cans in case of emergency, but that wouldn't last us through one night! She will also go back to continuous monitoring using a pulse oximeter while sleeping and spot checks throughout the day. Hopefully, this will all be temporary!

So....we will be here for at least one more day, or until she can sleep through the night without oxygen. Please pray that this happens! I'm not rushing to get home because I really want her back to baseline and safe, but I know the longer she is on oxygen, the harder it is to get her off.

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Cerebrocostomandibular Syndrome

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 never wi

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Life as a Leach

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