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

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use. At any rate, I wanted to share what I did for the party! It will take a few posts, so stay with me. I'll start with how I did the favors. These are the goody bags I made. I just bought solid colored gift bags and matched scrapbook paper to each bag. Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks. I put a round magnet on the back and...voila! A magnet! (note: hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons. Yes, I know this guy has lost half of his leg. The others were already packaged and I didn't want to open one up just to get a picture. I used a Lego mold to make the crayons. Caleb put small pieces of crayon in each m

Life as a Leach

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