Post-op day 2 evening

Abby's day started out ok, although she was pretty sure the entire world was against her when we wouldn't let her have a sip of water before her PICC placement. See her "woe is me" pose?!

She got her PICC placed this afternoon. It was quite a spectacle getting her downstairs. It took 3 staff members, and she was even special enough to require a nurse practitioner to accompany us! Apparently, she felt like she still wasn't getting enough attention.

She desatted quite a bit during the procedure and the decision was made that she needed to stay intubated and sedated for the time being. She will stay this way through the night and for her surgery (washout and potential closure) tomorrow. They will not take the breathing tube out in the OR after surgery, because they want to see how she does for a little while before they try to take it out.

She is safe, and the anesthesiologist chose this plan because it's the safest for her. They are hoping this will give her lungs a break and allow them to heal a bit. We are hopeful that the intubation will be short-lived, but we are also prepared for it to stay in longer if needed. She has earned herself her own nurse for a while. All of our nurses have been great, but I'm really thankful for the knowledge and expertise of our nurse tonight. She is totally on the ball.

Some of you may remember the terrible reaction Abby had to prolonged sedation after her jaw distraction surgery, as well as the pancreatitis caused by one of the many medicines. The doctors have been made aware of this and are monitoring everything closely. We are trying not to give her more sedation than absolutely necessary, so she has woken up several times.

I'm staying right beside her bed tonight because she does get agitated and has reached for her tube a few times. If I can calm her and avoid them from having to give her more medicines, I will gladly do it. I won't leave my girl.

Her hemoglobin has fallen even further now, so she will be getting a blood transfusion in a little while. This will make her OR time tomorrow safer as well. She's also getting some potassium because that has become pretty low and can affect the heart.

Thank you all for your prayers. Please keep them up! Our girl is in need of many. We are beyond thankful to God that Abby got to CHOP when she did before this got even worse.

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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