Our Hero, Dr. Campbell

Hero (noun): a person noted for courageous acts or nobility of character; a person who, in the opinion of others, has special achievements, abilities, or personal qualities and is regarded as a role model or ideal.

Dr. Campbell was a true hero to our family and to so many others. He created the VEPTR, the device that has given us 7 wonderful years with Abby. He has been our surgeon through thick and thin and has never given up on Abby, even when things seemed rather hopeless.

I'll never forget the first time we met him. It will be 5 years ago tomorrow that we had decided to go to CHOP to get his opinion on Abby's spine and ribs. We had been told by another orthopedic surgeon to just wait until things started to get bad, and that didn't sit well with me.

From the moment Dr. Campbell walked in the room, I knew we were in the presence of a brilliant man. Yet, he was always so humble. I've learned from experience that there are very few humble, brilliant surgeons! With his slow Texas drawl, Dr. Campbell proceeded to describe what Abby's ribs and spine looked like based on his experience with other kids with CCMS. Until now, we had never met another doctor who even knew what CCMS was, much less had operated on a CCMS kid!!! We knew we had made the right decision in going to Dr. Campbell.

Since then, Dr. Campbell has performed numerous surgeries on Abby. He always reassured us with his calm demeanor and quiet confidence. He really stressed quality of life, and we loved that about him. One of my favorite sayings of his was, "I can fix a broken rib, but I can't fix a broken spirit." While it would be easiest to keep Abby in a bubble, Dr. Campbell taught us to try to adapt activities to make them work for her. His philosophy has greatly affected the way we parent Abby.

Yesterday, our VEPTR community was sent reeling when we heard the news that Dr. Campbell had passed away. I am comforted in knowing for certain that Dr. Campbell is in the presence of God. I've been imagining all of the VEPTR kiddos who have left us running up to him with straight spines and healthy lungs to welcome into Heaven. But oh, will he be missed here on Earth!

Some of you may wonder how we can be so attached to a doctor, but Dr. Campbell is so much more than a doctor to us. He gave us hope when there was none. He saved Abby's life, and we owe him a debt we cannot repay. The VEPTR community is working on ways we can honor Dr. Campbell's legacy, but no amount of thanks will truly show how much he means to us.

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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