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 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 ❤️

Neighborhood walks
Finding our tree!
Trying out food again
Mom has had to get creative since I’m attached to my backpack feeding pump all day!
Putting the angel on the tree, part 1
Putting the angel on the tree, part 2
Bo getting familiar with the nativity
Snacking at a clinic appointment
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2 thoughts on “December 7, 2019, Day +79

  1. I hear the chemo leaves a metallic taste in their mouth and our son wanted pickles, steak and coffee Haagan Daz ice cream and anything that smelled like the hospital when he was released made him nauseous. For checkups we’d have to put perfume on a bandana and tie it around his face.? Remission is a learning process. You’ll get it as you go!❤️

  2. Know that we continue to pray for baby Bo and the rest of your beautiful family. Thank you for keeping us updated so we know how we can be praying now that your home. Your church family loves you and we care.
    Dorinda & Craig Alberthal

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