Wednesday, June 7, 2017

Post op day 16

Thankfully, Abby was able to make it until her 7:30 goal tonight, with her 2 hour "lung break" built in after lunch.  I'm hoping this continues and we can start cutting the lung break back.  

We are also actively weaning her from her Valium.  She's been on a pretty hefty dose around the clock and our pulmonologist wants to make sure the wean doesn't affect her breathing.  We have been watching her carefully for withdrawal symptoms, but so far so good!

She spent some time in the playroom this morning, as usual!  One of the positives of being on a floor where most kids are on precautions is that you pretty much have the playroom to yourself! 🤣


We have been fortunate to see lots of VEPTR families while we have been here!  It's always nice to talk with other families who get your life.  Neither of these girls were feeling picture time, but we did it anyway! :)


The highlight of Abby's day was getting a visit from her favorite music therapist, Mr. Pawel!  She actually got a real ukelele lesson today and learned the two chords needed to play the chorus of "I'm a believer!"  She was so excited and was incredibly serious and focused the entire time.  I definitely see ukelele lessons in our future! 


She also enjoyed banging out a beat on the drum kit for a while! 😝


One of the things I really like about Pawel is that he totally lets Abby lead the session.  Sometimes when she has really been feeling rotten, he just plays quiet lullabies on his guitar.  During particularly awful times like dressing changes, he sings silly songs to distract her.  Other times they play copy cat on the instruments.  And then, like today, he actually teaches her some skills on the uke or keyboard.  He goes with the flow and is so great. Music therapy is so important in the hospital setting!

Abby and I are thrilled to see Caleb and Matt tomorrow.  They will come up tomorrow after school (the last day!) and stay for the weekend.  We have missed them so much!

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