Here for a Few More Days

Abby woke up really well after surgery and was watching Mary Poppins in the PACU. We were happy to be able to go back to our room on the 4th floor instead of the PICU!

We are here for a few more days while we figure out Abby's breathing once again. It's been mentioned that this respiratory rate of 80-100 breaths per minute might be the new normal, which I can't accept! I didn't even like the new normal of 60 bpm!! If her rate increases after every surgery...well, we can't have that. The pulmonologist reiterated the concern of her catching a minor cold being very bad for her. Looking at her tiny little lungs on an X-ray today was disheartening.

Caleb was able to go down to the atrium today for Video Game Day with Microsoft. He was pretty much in heaven playing Minecraft for 2 hours! I was shocked that there were open gaming systems the entire time we were there! I thought it was going to be packed! He also got a nice drawstring bag and aluminum water bottle, which we can always use!

This evening, they allowed Abby to get up and walk around a bit. It was nice not being tied down by heart, lung, and CO2 monitors!! We spent time in the playroom and sat on my bed playing games. She really liked my new pillow, but got sassy when I tried to take her picture. I caught her mid eye roll!

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July 7, 2017 at 10:28 PM

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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