We have a prayer request today! I received a call from Bo’s transplant doctor a bit ago and she is concerned about his higher than normal liver enzymes. After his VOD (the liver issue that sent us to the PICU), his liver looked like it was recovering and the inflammation was going down. His most […]
December 28, 2019– Day +100 ?
Today is DAY +100! What a journey it’s been. Hard to believe we are here. We are filled with so much gratitude that our boy is doing AWESOME. Christmas was such a wonderful day for our family. It was quiet and slow and being together was the best gift of all. This was the first […]
December 22, 2019– Day +94
I can hardly believe today is Day +94. The last 3 weeks have flown by. Every day we are settling in more and more and finding our new routines. Bo is still going to clinic twice a week and will continue to until the end of January. Thank you for your prayers on Monday for […]
December 13, 2019– Day+85
I am happy to report that week 2 at home felt much smoother than week 1. We are starting to figure out our routines and feeling more confident in our ability to care for Bo outside of the hospital. A HUGE praise to report—Bo has started eating food!!!!! I was feeling discouraged wondering if he’d […]
December 7, 2019, Day +79
It’s hard to believe we’ve been home for a week. Some moments if feels longer, other moments it feels shorter. This week has been much harder than we anticipated. We had visions of home feeling relaxing and restful but instead it’s felt hectic, exhausting and chaotic—that’s the honest truth. It’s just been hard. But I’m […]
November 30, 2019– Day +72, We Are HOME!
Just wanted to write a short update to announce that we are finally home! Although we had hoped to be home for Thanksgiving, we ended up spending the holiday at the hospital. Bo’s team took him off the IV nutrition (TPN) on Tuesday, but wanted to watch his electrolytes and kidney function for a few […]
November 21, 2019– Day +63
Well, we are still in the hospital. I am happy to share that we are doing well–Bo is doing well and so are we. Once we grieved the passing of our initial going home date (the 18th), we were able to look toward home with eagerness and anticipation, not with impatience. That peace is only […]
November 15, 2019– Day +57
Bo has made so much progress over the last few days and weeks and today we have started to see some regression. Bo had been showing interest in drinking, eating, and taking his medications on his own so we were able to remove the feeding tube from his nose. His team also decided to take […]
November 12, 2019– Day +54
Bo has kept us busy these last few days! His energy level is returning to normal and he’s been so happy and playful. I tear up often just watching him enjoy life and smile at everyone who comes into our room. The last 5 weeks have been hard for a number of reasons, however I […]
November 7, 2019– Day +49
It’s been a quiet few days around here! Some days have felt more like 2 steps forward, one step back. Other days like today feel like 5 steps forward. It’s hard to predict when we’ll have good days and tougher days, but we are grateful to be seeing progress nonetheless. Bo had continued to struggle […]