Skip to main content

NYC Bound

Image
By
Tomorrow, we will head to New York to CHONY.  We have a tour of the hospital scheduled in the afternoon and need to hand over the MASSIVE amounts of medical history CHONY needs from CHOP!  On Friday, Abby has a CT scan and an MRI.  

Until today, we thought Abby would be doing the MRI under anesthesia.  During my pre-op phone call with the nurse, they didn’t like that Abby had recently been on an antibiotic for lung issues.  She wasn’t sick—it’s just the way her lungs our.  Our pulmonologist said she was fine for the MRI, but CHONY didn’t want to risk it.  To avoid the nightmare it would be to attempt to reschedule, Abby will be doing this MRI awake.  

She did it awake once before out of necessity (long story, but she couldn’t be intubated).  It was NOT pleasant, but she did it.  Please pray that all goes well.  We have music and I’m going to read aloud to her. We are also hoping Child Life will have some tricks.  If she can’t do it, we will have to come back and do it under anesthesia.  Please pray that she can!

We are also hoping to squeeze in a little bit of fun so that the trip isn’t all horrible.  

Thank you to the overwhelming number of you who purchased shirts!!  It was amazing and we are grateful!  Friday would be a fantastic day to wear it! 💜
Labels:

Comments

Post a Comment

Popular posts from this blog

Cerebrocostomandibular Syndrome

By
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 ...
10 comments
Read more

Bath Time Photos!!

By
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!)
Post a Comment
Read more

Imagination Movers Photo Recap

By
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...
13 comments
Read more