A "Normal" Day

Today we enjoyed our first day out, since we've been home. It's already been 1 week, and Mya is making huge progress. She actually brushed her teeth for the first time, previously she'd throw a fit if we even got close with the toothbrush. She's motoring around backwards on a little push car, and starting to mimics us more. It's very exciting to see our little girl back to somewhat of a normal status. Today we met Andrea, Carter and Elliott at the zoo. I was starting to get tired of being home for a week straight, plus the weather was far to beautiful to be inside today. Mya was great, she really likes the giraffes and the elephants. We all enjoyed a wonderful day out together.

Tomorrow we have Mya's swallow test & meeting with the pain team. I'm praying that we can be done with this tube. It's actually not been too bad, except for when the stupid thing pops open on it's own or when it needs to be changed. We've had accidents in almost every room of nasty smelling formula that has dripped onto furniture or the carpet, unintentionally. I don't think I've done this much laundry in a long time & we're planning to have our living room carpet professionally cleaned as a tube removal celebration. The topper was today, Mya was playing on our bed as I was folding laundry. I picked her up to move her and she was sitting in a puddle of the formula. That straw definitely broke the camel's back. I don't think it would be nearly as annoying if it didn't stink so much! Now we have to sleep with the stench! So gross.

I digress... The swallow test will decide with type of fluidity level Mya is "safe" for, and I think she's going to do great, just a gut feeling. I just hope they see the improvement that I do! The meeting with the pain team should be pretty uneventful, as we feel the medication wean has been a good plan, we haven't really noticed any withdrawal signs this far. Such a blessing! It would be nice to shake a few of the other meds, hopefully we come home with a shorter list in addition to losing the 2:00am med time.

We really appreciate your continued thoughts and prayers, we're not totally done... but each day brings us more normalcy. We definitely attribute it to all of the amazing prayer you've contributed!