A Successful First Week!

Thanks to a bunch of wonderful people, Abby's first week of school went perfectly! She absolutely loves it and asked today if she was going to school. She was disappointed to hear that we were only in the car to go to Caleb's fencing practice. :)

Our awesome new PT was there almost every second of the first three days (T, I feel like I am almost cheating on you by calling MB awesome! But you know how much we adore you!) and examined everything closely to see how she could help Abby to be more independent. One of the custodians heard that Abby couldn't do a particular style of paper towel dispenser, so she switched it out for one she could do! I was so surprised and grateful! There's a stool there so that she can reach things, and we have trained the bus drivers and assistants (she will ride a different bus coming and going) in all of the safety precautions.

Abby's teachers, the wonderful Mrs. C and Mrs. Y, have put a lot of procedures in place to help keep Abby safe. They even incorporated the word fragile into a vocabulary lesson so that it could be discussed each day last week and then used to describe Abby on her first day so that the class would understand the need to be gentle. The VP and dean have popped in to make sure everything is running smoothly, and it is!

The audiologist has checked in each day to make sure Abby is accessing the information in the classroom. Her FM system has been ordered and should be here this week. That is a special microphone the teacher wears that transmits her voice directly into Abby's hearing aid so that she won't miss anything. The nurse has been right on top of the crazy Code Orange days we have been having, so Abby hasn't made it out to the playground yet....hopefully next week!

I sent in a little thank you with a pack of Extra Gum thanking the people above for all of the EXTRA work they put into helping Abby have an awesome first week of school. It's little, but I definitely wanted them to know that I realize this is not the norm and we appreciate it!!

I met with the EMTs at the local fire department to fill them in on her school status (she is already registered as medically fragile, but only at our house--and I needed to give them updates anyway). If there are any airway emergencies, a helicopter will automatically be dispatched from JHH at the same time as the ambulance. I like that...a lot. All of this will pop up on her file if someone calls 911 on her. They also have multiple copies of her medical history.

So yeah....a lot of prepping and work for a lot of people, all to keep my sweet girl safe! But the grin on her face at the end of the day makes it all worth it. She absolutely loves every minute of the day! The girl loves life--what can I say?!

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 ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head. It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!! (Note the Lysol wipes in that last picture. They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun! They played lots of their own music, with some classic rock mixed in for the adults. There were also quite a few jokes and references to Baltimore, which was kind of fun. The whole night centered around this robot named Rock-o-Matic, or "Rocko." This is Mover Scott, and he wears Wobble Goggles that help him see new ideas. Caleb and Abby have a pair of goggles too. :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap. The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers Caleb did his share of singing and dancing too. He knows m...

Life as a Leach

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