I Cant Wait to Go Home!

Thats what the sweet girl said to me this evening as I out her to bed. Me neither, girlfriend! It's been a long month away from home and we are ready to return to whatever our normal is.

My dad is still in the hospital, but is doing better. He was taken off of oxygen today and has done well so far. We are hoping that he will come home early this week. We will all be very glad when he is home!

Abby has done well with tolerating her feeds, so we are hopefully that this is her last night with TPN. Her doctor will be back tomorrow, so we will see what she says. It will be interesting to see how she does once we start compressing the feeds (we want to do a whole lot in 30 minute chunks so that she doesn't have to be attached to a pump all day). I hope her stomach handles it okay!

I did have a tiny fright with her gtube. A small, movable bump appeared under the surface and was causing her pain. We had several doctors visit her and they have determined that it is a dissolvable stitch that didn't dissolve, so the body is trying to fight it off by surrounding it with stuff. It will hopefully go away on its own, so they don't think it's anything to worry about. Shew!

The weekends are long and boring, so we were very thankful for our visitors! It definitely helps make the days go faster and it's fun for Abby to have new faces besides me. I think she's tired of me. :).

We have also done a lot of playing with a few other kids on the unit. The little 6 year old boy next door has had fun playing with Abby. He is from Dubai and speaks almost no English, so we have been teaching him. (Who says the ESOL teacher is on leave right now?!). It's so cool to see kids still play together and enjoy each other, despite the language barrier. We have learned a little Arabic too! We have also been playing a lot of games with our buddy I shared about on Thanksgiving. Everyone especially enjoys chasing after his remote control truck as he drives it around the unit!

We still aren't sure when we will be home. It really depends on how she handles compressing these feeds. Friday will be a month inpatient....for a surgery that was supposed to be 10 days in! But, at least they discovered the problem and were able to treat it. She is feeling well and is happy, so we can hang out a little while longer.

Just as I wrote this last sentence, the kid next door started screaming through our paper thin walls.

I can do this. I can do this. I can do this...

*sigh*

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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