We love you

Today was Sadie's four week clinic visit. From here on out she will be back every two weeks for a clinic visit until we reach a time where it spaces out a little more and a little more and a little more until we are at the year benchmark and she can go months between check ups. 

Today was also the last visit we have to do while remaining close to the hospital. We will be going home on Wednesday. Sadie was a rock star today- she's made so much progress on her blood work- she walked in, sat down, gave her arm and only cried with the pinch of the needle and then got herself calm. She did struggle a little getting through the mental aspects of her other tests, but she made it. During her actual assessment with her doctors they asked her how she was feeling and she said "hungry"- which is a miracle. Sadie hasn't wanted breakfast in months- months and months- her loss of appetite was one of the first real outward symptoms she had and progressively got worse as she got further along in severity. To hear her say "Hungry" after 8am labs made the entire room smile. 

At the end of her visit today her Doctor looked at her and told her "We love you" which sums up the team at Shands. They are all so incredibly loving and caring and they really are Sadie's team- and part of our family. 

As for how Sadie's doing: She's eating- she's eating more and more often. She had lost weight post transplant and today was the first weigh in where she's started to gain it back. She has energy- some days she goes all day- some days she needs breaks- some days are rest days. They vary, no real rhyme or reason, she'll wake up and let me know how she feels and we go from there. She is incredibly excited to go home- she's ready to see Harper- ready to be in her own room- ready to start her new normal. 

Sadie's transplant team is happy with her progress, they're proud of her- they like the way her echo and EKG look. They're going to wait to remove her steroid, but are happy with her function off of caffeine. When we come back in a couple of weeks they're going to fit her with a heart monitor again to check her overnight function. Sadie keeps a slower than "normal" heart rate range, but it's her normal and the doctors are happy with it as long as her function and output remain good. When they repeat the monitor testing in a couple of weeks it will be her heart as it is- enough time has passed since transplant that the meds pre transplant should be out of her system and she will be off the other meds that can manipulate it - which means the function and rates will be her own.  What a ways she's come in such a small amount of time.

We have packed. We have refilled medications. We have done all the check ups. Will and Harper have been working hard to make sure home is ready for us. 
Home.
We're going home.