She did great overnight and slept as much as she could when they have to come in every hour to poke you. The morning started quick and just kept moving!! Today she crushed her PT goal of “walking a little bit”. She successfully walked all the way down the hallway to “the window” and back! Way more than a little bit. The day Avery walked to “the window” was really the first day she can remember after her surgery so when she was giving Emmy some advice there was a lot of talk about how beautiful it was outside “the window”. Emmy was determined to see what was out that window!! When I texted Avery the picture by the window her reply was “THE WINDOW!!”  She smiled during her walk. I know it had to have been painful but she was her stoic self and didn’t say a word about being in pain. This afternoon, she got up again to the chair. She was hurting way more this afternoon but she of course was still willing to give it a go. Emmy’s surgery cultures officially came back negative! If you were around for Avery’s journey, you will know how wonderful that news is to our ears! Most families don’t celebrate that milestone but we sure did!! Emmy’s been having lots of dreams about Avery cuddling with her which is just the cutest thing in the world and way better than those scary ones. We have increased the rate on her feeds and she seems to be handling the increase really well. They changed her central line dressing, d/c’d her pain button and added another pain med to replace it, AND condensed her pumps to a single pole!

Lastly (and definitely the best thing that’s happened all week according to Emmy), she Facetimed with her cabin friends from Camp Hope! Unfortunately, camp was this week and therefore we had to miss it this year but getting to see her Camp Hope family today made her face light up like I haven’t seen in many many months. Although I could go on and on about all the magical things camp has done for my children (and me!), the friendships and understanding it has brought to their lives is a blessing we could never give her as her parents who haven’t suffered from this horrible disease. The pictures say it all. These girls, and counselors, and nurses are her chosen family and often times the bond you create with your chosen family can bring strength and happiness from a whole new level within yourself. They did that for Emmy today. 

PS: Avery was very excited to share that she got to hold real human organs today at her SDSU nursing camp. I’ll spare you those pictures that very aggressively greeted me when I opened the text from her!!  It really was a great day for all the Winkelmans!