Faces of Cerebrocostomandibular Syndrome

Today is Rare Disease Day, a day when all of the orphan diseases can unite and not feel quite so alone. It's a day to show that while your disease isn't as well-known as others, you are still supported and loved. And yes, it's celebrated on February 29th on purpose. :)

In honor of Rare Disease Day, I wanted to share (with their permission, of course!) a little about some of our friends with Cerebrocostomandibular Syndrome.

We are the faces of Cerebrocostomandibular Syndrome.

We are sons. We like painting, cars, and cartoons.

We fight naps! We like to build things and knock them down.

We are superheroes! We love to count, sort shapes, and play with animals.

We are aunts to cute nephews. We love Bruce Springsteen, chick flix, and the New York Giants.

We are college seniors! We live on campus, are presidents of organizations, and are finishing bachelors degrees.

We are independent! We love Chinese food, traveling, and family.

We are college seniors. We are in plays at school, love to shop, and listen to audiobooks.

We are Taylor Swift fanatics! We go to concerts, enjoy movies, and...did we mention we love Taylor Swift?!

We are athletes. We play baseball and bowling and go to hockey games.

We are honors students who participate in Math Counts and Geography Bees.

We are boy scouts who love the outdoors, camping, and riding our bikes.

We are little brothers who wear bow ties, love Dr. Who, and pandas.

We are joyful! We love dolls, I-Love-You-fingers, and laughing.

We are little hams. We sing along to Frozen, love dress-up, and dance like nobody's watching!

We are sisters. We love cuddling, being with our families, and enjoying each day as it comes.

We are the Faces of CCMS...and so much more!

Happy Rare Disease Day!

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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