Saturday, April 26, 2014
I wanted to share some other information with everyone as well. The biggest questions I get is how long will we be in the hospital and when will Hope get her new heart. These questions are impossible to answer. There are so many factors involved in receiving a new heart and while Hope is at the top of the transplant list for her size...someone has to go through the unbelievably difficult time of losing their child and be willing to donate their organs. It is something we think about so much...the grief this family will have to face in order for Hope to live. It breaks our hearts all the time. I started a letter to our donor family on the day Hope was listed and I have continued writing many other times. I plan to give the letter to the hospital the day after Hope receives her heart and I will continue to write to this amazing family. I don't know if they will ever read the letters or respond, but I really hope they someday want to know how much they have impacted our family with their ultimate gift of life.
As many of you that follow me on Facebook know Hope has been getting out of her room a lot. We try and get her out and walking around as much as possible. She is dressed every single day (thank you mom for supplying the endless sundresses as that is the only thing that works well with her PICC line). She loves the playroom, fish tank, Ronald McDonald Family Room, Rooftop (we have to have a nurse with us that is certified in Pediatric Advanced Life Support with us when we go there), and the Lobby. It takes some work to get her out of her room, but it is totally worth it. She is getting the strength back in her legs and likes to be around other people (we do practically rub her down in sanitizer when we are out and when we get back).
If anyone would like to send a card, here is the address (she loves cards and we hang them all over her wall in her room):
Patient Mail M40-16
Cleveland Clinic Children's Hospital
9500 Euclid Avenue
Cleveland, OH 44195
Posted by Wodzisz Family at 1:31 PM