Skip to main content

Times, They Are A'Changing!

Surgery dates and times, that is!

I got a call Tuesday night from CHOP about Abby's VEPTR surgery in April.  It was supposed to be the 6th and now they are changing it to the 23rd.  To those of you who don't have a medically complex child, this may not seem like a big deal.  But given the fact that we are planning for a one month stay and Abby's many appointments are a juggling act as it is, this threw me into a tailspin.  I'd completely blocked out April for surgery and scheduled a ton of stuff for the beginning of May...yay.

A few tears were definitely shed over the frustration and stress of it all.  Then I pulled on my big girl panties and got to work.

After making many phone calls to The Ronald McDonald House (we were at the top of the list when I put in the room request in September...with the date changes, I'm sure we probably won't get in...), ENT, the dentist, audiology, my boss, etc., I think I have everything figured out.  Matt had also blocked out April, but he has some big things for May that really can't be changed...so it looks like I'll be on my own for most of the hospital stay.  At least he can be there for the surgery.  Abby and I will have lots of GIRL TIME!  (If you have ever heard her say this, it's with lots of sass and emphasis...she loves her girl time!)

As always, there is a silver lining!  Two, actually!  Abby will now be able to get her hearing aids on April 7th!  We weren't able to get in until May because of her surgery, but now she will get them a whole month earlier.  This makes me very happy because I was concerned about everything she was missing in school while she couldn't really hear.

We weren't going to be able to do The Red Shoe Shuffle for RMH because of Abby's surgery (it was the weekend after!), and now we can!  I don't know how much fundraising will be able to happen between now and then, given the very late start and everything going on with my dad, but we are thrilled to be able to participate and support our favorite charity.

So, we're choosing joy, are thankful for the silver linings, and are trusting that this surgery was changed for a reason.  My Eternal Optimist (that would be Matt) pointed out that this gives Abby's ribs 17 more days to grow strong enough to hold the VEPTR!

It's all good.  It always is.

Comments

Popular posts from this blog

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...