Rare Disease Day Recap

Matt and I were amazed and humbled at the number of people who took the time to support our family by sending in their "blue" pictures. There were many others who wrote Facebook posts to show support as well. As I said in my Facebook post yesterday, the thing I love about Rare Disease Day is that for once, you're not alone. When YOU are the expert teaching the doctors about your daughter's syndrome all of the time, it can be draining. With only 9 other kids in the world with the same syndrome, there's not lot of opportunity to band together. But on February 28th, all of the families living with a rare disease can join together and show how strong they really are!

Thank you, thank you, thank you for loving on our family in this way! The kids loved seeing all of the pictures! Here's the recap:

Family members showed us how much they love Abby...

Does Anna look up to something, or what?!

We had schools wearing their blue...

Abby's teachers showed off their blue...

Ms. Sarah even had a matching "I love you" sign!

Friends from all across the country showed us their love! Most of these people have never even met Abby, but they have followed her story and wanted to show their support.

The Russell family even made a "rare" braided Challah bread!

Two more rare cuties!

While we have never met the Matlock family in real life, Rachel and I have bonded over trach life and in learning how to God in this journey. She is a real encouragement to me!

Teacher friends wore blue to support our family!

Lots of church friends showed us the love...

Tori is one of Abby's good friends!

Abby loves her "Big Abby!"

Here are more of our friends showing off their blue!

This was one of Abby's wonderful NICU nurses, wearing her blue for Abs!

We even had some four-legged friends getting in on the action!

THANK YOU FOR SPREADING THE BLUE...AND THE LOVE!!!!!!

Love,

The Leach Family <3 p="">

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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