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 year Naomi has shown a real interest in and understanding of Advent which has been so special. All month long she has faithfully hung an ornament on the Advent tree each morning and we have read from the Advent book tracing the story of Jesus from the Old Testament to the New. Christmas morning was the pinnacle as we read about the birth of Jesus and she placed the star at the top the Advent tree. Watching her grow in her understanding of what Immanuel—God with us means has been so special. This has been a Christmas we will never forget.
Bo has made some big strides this week! First, we were able to mail back BOTH pumps to Home Health! Bo no longer needs IV fluids overnight and is completely done with his feeding tube and pump. This feels like a huge deal—he is no longer attached to anything day or night. It’s also a huge relief for us as his caregivers because each time we would access his central line to hook him up to the pump was an opportunity for bacteria to get in and cause an infection, so we are relieved to no longer have that as a risk.
Bo has been able to drop several of the medications he originally went home on. Many of you may recall a photo I posted when we first got home of a bowl with about 10 syringes in it—we gave those twice a day. Bo now only needs 3-5 meds (depending on the day), and eventually he will only need 3 of them for the rest of this first year post transplant. Huge progress!
One of the biggest praises is that Bo has not yet shown any clear symptoms of Graft vs. Host Disease (GVHD). As you may recall, there’s been times in the last 100 days when they were considering if his GI issues were signs of GVHD, but thankfully they haven’t been. There’s still a chance that it could happen while they wean his immunosuppressant medication in the coming weeks— my prayer has been and continues to be that God would cause his new blood to only ever bring life and health to his body.
Bo is starting to get hair again! Each day his head looks a little more covered and it’s coming in really dark! His eyelashes are long and thick and he almost has full eyebrows again. It’s amazing how much hair has changed his appearance, at least in my eyes. Being bald made him look like a baby for so long, but as his hair comes back, he’s growing up and taking on more of a “big boy” look.
Last but certainly not least—Bo took his first real steps on Christmas Eve! After his time in the PICU, we wondered how long it might take for him to catch up to where he would be developmentally had he not had the setbacks he did. He is so determined and it feels like fully walking and running are not far off. I’m so excited for him and he is very proud of himself and the progress he’s making.
Prayer requests for this week:
- Protection from GVHD as his doctor weans his immunosuppression medication
- Continued appetite (we are seeing answers to prayer in this area too!)
- For his kidneys to heal and his blood pressure to continue to come down so he can come off the final 2 blood pressure medications