2015 has been a life-changing year. At first, I wanted to call it stressful or crazy or emotional, and although the year was those things because of Hana’s heart condition, it was also a year of blessings and prayers and family and friends and love and support and amazement and gratitude. I am continually amazed by people’s love and I have never experienced like we did in 2015. Thank you to all of you by showing the really amazingly beautiful side of humanity. It is a great reminder that we are not alone and that we can impact lives more than we think and even little Hana has impacted so many lives and she doesn’t even know it!
My wish for 2016 is to get a perfectly suited, new heart for Hana. I realize this will come because another child did not live and the heaviness of this is something I respect deeply.
Hana has been doing well. She is back on continuous feeds and we are watching the administration of her meds carefully – so that they don’t upset her stomach. She seems to have gotten her energy back and seems more and more like herself. We aren’t getting out of the room as much us I’d like yet but hopefully that will improve next week. Hana also needs to continue to work on her strength, especially in her legs with standing, which she is not doing much of at all. I think the biggest hurdle right now is getting Hana back on her days and nights. She’s been up very late at night or getting up for hours in the middle of the night. She is also getting up very late in the morning and sleeping a lot. She is very hard to convince to get up or go to sleep! Sleeping in the hospital has been very difficult for me and I am getting up at least once an hour. Hopefully we can all adjust soon!
Happy New Year!
Day 44 in the hospital, Day 26 post-Berlin Heart, Day 17 on the transplant list.