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 learning that’s OK. It’s OK for something to be hard, especially something as important as caring for our Bo. Even if it doesn’t get easier anytime soon, he’s worth it and the growth happening in each of us individually, in our marriage and in our family is worth it.
We have had 2 clinic appointments this week, the first of many. Both went well—labs are looking stable and minor adjustments have been made to the dosing of Bo’s medications. The electrolyte that had been low prior to discharge continues to be low but it seems as though they aren’t concerned about us being home since they still see us often enough. Bo will continue to have twice weekly appointments through the end of January.
We have begun to see some small improvements in Bo’s appetite and overall desire for food. There are days where he refuses to put anything in his mouth and other days like yesterday where he ate a few pieces of cheese, hot dog and olives. We have been told that many kids end up disliking foods they enjoyed prior to transplant and like new or different foods after transplant. We are offering him some of everything to see what he enjoys and it appears that he is preferring more salty tasting foods. We are scheduled to begin working with an Occupational Therapist (OT) later this month. Hoping Bo can make some good strides before then, but hopeful the therapist can help him eat enough to get off the feeding tube!
Prayer requests for this coming week:
- For Bo’s weekly labs to continue to looks good!
- For continued endurance and grace for Lance and myself as we figure out our family’s new and evolving normal
- For protection from illness
Here are a few pictures from Bo’s first week back home ❤️