In typical Abby fashion

This morning, Abby was in so much excruciating pain that she just sobbed and couldn't even stand by herself for a minute. The OT was really concerned that she wasn't making a lot of progress.

Fast forward a few hours to when the PT came in. Abby got out of bed, took a few tentative steps, and decided to walk halfway around the unit to the playroom. That's so Abby!! :)

She's still needing a strong hold on my hand, but this is a HUGE step for her. The playroom is so motivating! We were going to walk back there tonight, but she fell asleep in the middle of putting a puzzle together with me! I think she's probably out for the night!

The pain team is in the process of transferring her over to oral pain meds now that she is getting more food in her belly. I'm encouraging Abby to eat preferred foods and just putting the pediasure through her tube for now. I have learned that pushing the pediasure too soon will cause her to be completely turned off to food completely.

She is still sleeping on cpap and showing that she needs it. The pulmonologist doesn't want to ake any major decisions about her future with cpap until her pain meds are decreased, but he warned us that there is a good possibility that Abby will go home with it--maybe short term, maybe not. If it's only at night, it won't affect our day to day life too much except that she won't be able to spend the night anywhere while she is on it. Cpap really isn't what we want, but I just go back to we've done a trach and a vent. We can do this!

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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 ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head. It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!! (Note the Lysol wipes in that last picture. They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun! They played lots of their own music, with some classic rock mixed in for the adults. There were also quite a few jokes and references to Baltimore, which was kind of fun. The whole night centered around this robot named Rock-o-Matic, or "Rocko." This is Mover Scott, and he wears Wobble Goggles that help him see new ideas. Caleb and Abby have a pair of goggles too. :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap. The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers Caleb did his share of singing and dancing too. He knows m...

Life as a Leach

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