Settling at the Mount

I swear I wrote this post once before, but it has disappeared. It's a mystery...

Yesterday, Abby was transported to Mount Washington Pediatric Hospital. The transport bed was soooo tiny and I felt a little clausterphobic just looking at it! We said goodbye to our friends at UMMC and were off!

We drove to the hospital and arrived right after the transport team did. Upon arrival, we were ushered in to our first family meeting with Abby's doctor, our social worker, and our case manager. They went over tons of information and asked lots of questions. It was good to share what we knew and have them give feedback in a few areas (read: insurance!)

WE LOVE OUR DOCTOR!! Dr. A. is extremely knowledgeable and has a great sense of humor. That's just not a combination that we've found in too many of our doctors so far, so it's kind of refreshing. She is very personable and has stopped by just to visit Abby several times over the last two days. Dr. A even gushed about how cute she is to a new fellow who was touring the unit today. Anyone who talks about my daughter's beauty is okay in my book!

Dr. A is also cautious and decisive, which I like. Wishy-washy doctors who act like they aren't really sure what they should do just don't give me a lot of confidence! Plus, Dr. A. seemed to recognize that at this point, we know more about Abby than anyone there. She included us in the decision-making and seemed to truly value our opinion.

Imagine...the parents may actually know something!!

gasp!

Today, we met Abby's therapists: OT, PT, the SLP, and CLS***. You know what I looooove about this hospital??? She has exactly one of each! No more explaining to the new PT person what the last one did or didn't do! Unless someone is out sick, Abby will see the same people every day. Yippee! There's definitely something to be said for consistency.

***Occupational therapist, physical therapist, speech-language pathologist, and child life specialist.

The bad news of the day: Abby's g-tube site is infected. Our cautious and decisive doctor took one look at it and said she wasn't going to wait and see if it got better--she was starting a round of antibiotics. Sounds good to me!

Because of the infection and the pain it caused, Abby wasn't in the best of moods today. Lots of people came to evaluate her for various things and she just wasn't having it. I held her a lot in between evaluations to try to soothe her and settle her down (such a sacrifice, I know...it's such a pain holding that gorgeous little girl!) :) Abby didn't even tolerate the CLS and she was just playing with her! Thankfully, I was able to calm her down and get her to take a good nap in the afternoon. When she woke up, she was in a much better mood and the CLS came back to play again. It was much more successful the second time around!

We are so glad that we are settling at the Mount. We (I) were definitely hesitant about coming--maybe it was the ~~fact that I really don't do change well because I have slight issues with control and have had too much change in my life recently~~ fear of the unknown--but we're really liking it now that we're here.

Our one complaint? BABY JAILS! I really hate these cribs. They extend 6 feet in the air (some even have covers!) and just look like prison cells. Plus, they're humongous. Abby is a tiny girl in this monster bed and it's just ridiculous.

But, I guess it's really saying something if my biggest complaint is the type of bed she's staying in. :)

In other news: I took some more Christmas pictures today of my girl using her real stocking. Look for them in the next few days. :) (She promptly peed all over her Christmas outfit, but at least she waited until after the photo shoot was finished!)

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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