A Letter to My Daughter

Dear sweet Abby Joy,

I can honestly not believe this day is here! There was a time when no one was sure you would make it, but we should have known better. From the minute you bit the nurse practitioner trying to intubate you after you were born, we knew you were feisty! One of my favorite pictures of you is what Caleb calls your "Fighter Girl" pose.

It's as if you were trying so desperately to beg us not to give up on you. We never did, Abby. We prayed, and cried, and researched, and prayed some more, hoping against hope that God would spare your life. Somehow, we knew that you were not going to just be a statistic.

Now, those days seem so long ago. I almost feel like that was someone else's life! Instead of a frail, fragile infant, I have a giggly, sassy, smart baby...who, if I admit it to myself, is almost a toddler!

I am so proud of the progress you have made over the last year, Abby! Just 4 months ago, you were completely vent dependent. In less than 3 months, you were able to be off of the vent whenever you're awake! Because of that, your development skyrocketed this summer. You are signing and pointing to communicate with us, you follow our commands (when you want to...), you are standing very well and learning how to pull up from a seated and kneeling position, and you are getting so strong! You have worked so hard this year.

With all that strength comes a lot of sassiness, of course! You have quite a temper and can make some of the ugliest mad faces I have ever seen! You're certainly learning how to irritate your brother, like when you grab the toys out of his hand just to throw them on the floor. It's hard for us to keep your filter on you, now that you've discovered what a fun game it is to pull it off. I think you do it just to get the extra attention! One of my favorite moments was when you pulled your vent off simply out of spite when the doctor had already started giving you the medicine to make you go to sleep. That's my girl!

Abby, I never want you to forget the miracles God has done in your life. He made your spine straight. There's no medical explanation for why it happened, but we know. He is putting your ribs back together and filling in those gaps, one by one. He has made your sternum strong so that your heart and lungs are protected. He corrected your vision and your hearing. He has strengthened your lungs so that you are able to breathe without the ventilator. Never stop thanking Him for the wonderful things He has done. "Our God is greater, our God is stronger, God, You are higher than any other. Our God is healer, awesome in power. Our God! Our God!" We have been able to show so many doctors that there is more to life than statistics and medical journals. God can, and does, perform miracles.

Your daddy and I believe that God gave you to us so that you could change the world, and you're doing it, Abby Joy! You have touched the lives of so many people. One day I will share with you some of the stories I've heard of how you have changed lives. Until then, know that you are living a life of purpose, even as a little baby. I hope that you never stop showing others how big our God is!

I love you more than you will ever know. You are so loved, and so wanted. Happy first birthday, sweet girl. Here's to many more!

Love,

Momma

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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