Doctor's Appointment #2

Abby's GI appointment was equally positive. She weighs a whopping 9 lbs 3 oz now, and the doctor was pleased with her growth. Get this: Abby is very nearly on the chart now for weight!!!!! :)

Her g-tube looks good and the doctor increased her feeds a bit. Now she gets 70 mls during the day and 30 mls continuously at night. We'll go back in a month when she will hopefully get another increase!

Our next appointment is pulminology, but it's not for a few more weeks. After we learn about her lung function, we'll be able to go to orthopedics and craniofacial. That's when we'll learn about the surgeries Abby might have this summer.

It's a lot to deal with, but I'm thankful that we're to the point where we actually can discuss things other than the airway. It means that Abby is stable enough to move forward!

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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!!

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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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