Rylynn's big adventure!

Yesterday was a big day for Rylynn! She had her usual morning therapies, dressing changes, etc. and then the big adventure... Our child life coordinater, Chelsea got permission from Ry's team of doctors to take her downstairs for a few minutes for an event they were hosting for all the patients here at Children's. It was Christmas in July which included carnival-like games, music and other activities. Our intent was to arrive 30 minutes early to avoid contact with the other kids. It took a little longer than we anticipated to load up and mobilize so we only arrived a few minutes early. Honestly, Ry was less than impressed and even a bit overwhelmed, but she really enjoyed the walk down. She was able to see the train, butterflies, and some sunshine in the bright corridors. It was no easy feat getting her down there and we're so thankful that the staff went to all the trouble that they did for the quick trip. I know it was good for Rylynn.

This is the first time EVER that Ry agreed to wear a mask. I was so proud of her!

When we arrived back to our room, Ry had another surprise waiting for her. Our transplant coordinater, Laurie was excited with Ry's new found appetite and surprised her with Sprinkles cupcakes! These are our favorite cupcakes ever! There was a pink one for Rylynn and she ate half of it all by herself (which is more than she's ever eaten). Yay!

Today we've had a good day hanging out with Daddy. Ry had PT this morning and Gilly was so proud to see how hard she worked. I just wish she didn't always cry through her entire session. :( I was so proud this morning, Rylynn bent down three times to pick a ring off the floor. I know it couldn't have been easy and she used all her strength to do it with very little help. She can now stand while only holding someone's hand or onto something for support. Today we sat her up in bed for a long time while the three of us played blocks, colored, painted fingernails (Daddy barely escaped with clean nails), watched movies, and ate snacks. It was a nice day. The weekends are nice and quiet here. We have only one therapy session and much fewer staff popping in.

Ry has finally come to appreciate getting creative with her "bandaid". The dressing is changed daily and for many days we asked to decorate it with stickers or pictures and she'd have no part of it. But the past two days she has helped pick an animal to be drawn on it. Yesterday she got a puppy, today it was a penguin. Pretty cute, huh?

We are still having some real problems with Ry's night time sleep (or lack there of). Tonight the physician have suggested that we give her a mild sleep aid. It's important for her to get those solid ZZZs in for her body to rest.

We are hopeful that Rylynn continues to make steps forward. She has done so remarkably well.

We're still praying there is an angel heart out there just for Ry.