Christmas 2019 Recap

Christmas 2019 was a good one! Our Disney trip was a big part of Christmas this year (hence the Disney pajama pants), and Santa brought tickets to see Sponge Bob the Musical a few weeks early in Philadelphia. But the kids still had plenty to open! A favorite gift was a Star Wars Droid from Santa that the kids could build and program together. We worked on it today and it is pretty cool!

Highlights for Caleb included: several experience gifts like the DC Auto Show, a tour of DC monuments, The Museum of the Bible, an archery lesson, and a Caps game. He also got a weighted blanket from Nina and Paw Paw that he loves to sleep under and a comfy Harry Potter robe from Grammy and Pop.

Highlights for Abby included: lots of great new books, a big slime kit with all kinds of mix-ins, and several LOL dolls. She also got new Playmobil sets from Nina and Paw Paw and Grammy and Pop, so she pretty much has a whole town that she can make stories up about!

The kids have enjoyed lots of family time at home as we try to avoid catching the flu that has taken over our area. They don't seem to mind at all though, because they have had lots of fun playing with new toys and getting in that precious video game time that they don't usually have when school is in session.

As always, we were thankful to be home for Christmas instead of in the hospital. Having spent 3 Christmases inpatient, we know all too well how hard it is on a family to be in that situation and we don't take for granted that we are home together.

The week between Christmas and New Year's has included visiting with both sets of grandparents and both great-grandmothers, hosting an activity hour at The Ronald McDonald House, attending a 50th anniversary party for my aunt and uncle (just Caleb and me so that Abby could avoid germs), Matt and I volunteering (separately) at Safe Nights at our church, and Abby performing in her first piano recital.

We are extending our break just a little bit longer, as Abby has appointments in New York City on the 3rd with a new specialist who we are hoping will have some good insights on Abby's spine. He is THE surgeon to go to and only takes the most complex cases. I'm not thrilled that Abby falls into this category, but we are grateful that he has taken her on as a patient. We will go up as a family on the 2nd and stay until the 4th. We wanted to make sure that we were able to do something fun while we were up there so that it wasn't just all medical, so we will be visiting the Museum of Natural History and enjoying The Radio Center Music Hall Rockettes' Christmas Spectacular! The kids are excited, which makes the tough stuff a little more bearable. Of course, we will continue to be vigilant about germs with masks and hand sanitizer.

We hope you all had a wonderful Christmas celebrating the birth of our savior!

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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