On a roll!

This girl is on a roll!  Levels are looking better everyday. We were able to stop some of meds today.  

She also went for a swallow study to make sure she wouldn't aspirate fluid into her lungs when she eats. She was so excited we got to go on a LONG wagon ride. She even wore her mask the whole way there and the whole way back! 

 She did great, no problems with swallowing! Which means all those times you saw my daughter chew up her food and spit it out in public... It's because she was being NAUGHTY and trying to embarrass her mom. Not because she can't swallow.  ( ok so maybe her belly hurt a bit and she did want food in there) either way she best be done with that now! 

" Ummmm I'm A little unsure about this big machine"

Berkley and I had such a fun day today we played with every toy under the sun. 

We read books about tongues. 

Drew lots of pictures. 

Even blew a whistle for a while. THANKS MINDY!!!

Rolled around in her toys. 

Got a new best friend. 

Thanks to all my awesome co workers! She LOVES her new friend!

After this busy day we are both ready for bed. 

Sorry I know this post is a little picture overload and not much info. Basically we're just hanging out. Giving everything time. The plan is to get her to where she just has her o2, NG tube for nutrition supplement, and her PICC line for meds and frequent blood work. At that point she will be discharged. Then we will hang out here in SLC for a month or so. Our goal is to be home HOME by July. 

In a few months they will do a cardiac cath to look at her heart and see if the damage is permanent. At that point we will decided if she still needs the oxygen and heart medications. 

So that's kind if where we are at.

Good night!