These are the No-Nos Abby wears to keep her fingers out of her mouth. We usually only have her wear them at night, but we occasionally put them on while she's awake...but not for the reason you might think! She has recently discovered that her filter (the thing on her trach that sticks out and acts like a nose, filtering and humidifying the air in her trach) comes off. She spends most of her day pulling it off and chucking it across the floor, or banging it on her high chair, or hiding it so we can't find it. The No-Nos come in handy once in a while!
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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