Getting closer to going home!

Sorry I didn't post last night. I was so exhausted by the time that Abby went to sleep that I fell asleep too!

Abby has had a busy 2 days. Since she is no long tied to an iv pole, she's enjoying activities around the hospital! She got to meet Mike Berenstain, the author of The Berenstain Bears.

He wrote a new book about visiting the hospital based on what he has seen at CHOP.

The kids all got a book, and then he demonstrated how he draws the bears.

Afterwards, Abby got to keep the drawings that he made! They are pretty cool, one-of-a-kind souvenirs!

We also visited The Seashore Garden, which is a really cool rooftop garden with lots of toys. Unfortunately, there was a little boy there who was a little rough, so I spent most of my time being Abby's bodyguard. But she still managed to have fun, even with Momma hovering!

We even met another therapy dog on our way to the garden. This makes #5 this stay! :)

Today, she got to go to a princess ball where they had crafts and a photo booth with lots of princess decorations.

She has been cleared by OT and PT, and her repeat measurements of her chest wall show that she's getting more room.

We had X-rays and a ct scan today and are hoping to get the results tomorrow. I've found a pediatric therapy center in Edgewater that will do her PT. I spoke to the therapist myself and she seemed very willing to learn about the veptr to help Abby. I called several therapy centers who were reluctant to take her before I found this one, so I'm happy I didn't have to go all the way to Baltimore!

The best news is that Abby slept without cpap last night! If she does it tonight, she won't need to use cpap at home. Our home company brought it today and trained me on it, just to be safe. We will keep it in our home at least for a while just in case she needs it. We are hopeful that she will do well again tonight so that we can keep the machine in the closet at home. :)

Our plan is to go home tomorrow. Special thanks to my brother in law for coming to get us, since Matt is knee deep in church yard sale stuff! My parents have been here the last few days and have been so helpful in entertaining Abby while I made phone calls to therapists, got trained on the cpap, etc.

My parents got to meet our famous hero, Dr. Campbell, yesterday. He is such a wonderful man. I'm so thankful he gave my girl a chance at a better life!

So...almost home! She won't be ready to go out anywhere for a while, but at least she can recover in the comfort of her own home! She tires really easily and the meds knock her out, so I'm figuring she will need one or two naps a day.

Thanks for all of the prayers and words of encouragement! We are thrilled that she gets to come home so quickly!!! God is so good!

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 never wi

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 most of the words to the songs, so

Life as a Leach

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