It’s been a couple of weeks since I did an update but, that usually means it’s been uneventful!
After 2 long weeks of the girls not seeing each other due to Sawyer’s COVID, they were so so excited to see each other. So excited that they accidentally pulled Harper’s feeding tube playing
. Thankfully, she had already been taken off of the tube feeds so, it was only being used for meds anyways. That means Harper is now doing all of her oral meds, by mouth! As of this week, she has 4 negative CMV labs so she is off of one of her IV meds! She still has 1 IV medication and IV fluids at night but, still 2 less infusions a day! Currently no sign of the fluids of other infusion being stopped. However, if her liver labs start to be consistently in the “normal” range, then we may be able to drop the IV med she is still on. They are still mildly elevated at the moment but, MUCH better than a few weeks ago. She has been having random episodes of severe skin issues that I think may be related to graft vs host disease however, her doctor is not sure of that yet. It’s really awful when this happens but, we have figured out that with Benadryl and prescription steroid ointment, it resolves fairly quickly. Hoping this stops soon for her sake!
. Thankfully, she had already been taken off of the tube feeds so, it was only being used for meds anyways. That means Harper is now doing all of her oral meds, by mouth! As of this week, she has 4 negative CMV labs so she is off of one of her IV meds! She still has 1 IV medication and IV fluids at night but, still 2 less infusions a day! Currently no sign of the fluids of other infusion being stopped. However, if her liver labs start to be consistently in the “normal” range, then we may be able to drop the IV med she is still on. They are still mildly elevated at the moment but, MUCH better than a few weeks ago. She has been having random episodes of severe skin issues that I think may be related to graft vs host disease however, her doctor is not sure of that yet. It’s really awful when this happens but, we have figured out that with Benadryl and prescription steroid ointment, it resolves fairly quickly. Hoping this stops soon for her sake!Sawyer is officially down to just 2 prescription meds. One antiviral that will be stopped at 1yr post-transplant as well as a prophylactic antibiotic that will be stopped soon as well! Slowly but surely, she is getting some normalcy back.
Here are some hilarious pictures of them playing “salon”. Cutting Harper’s imaginary hair and Sawyer doing her “make-up”. Also, Harper at her CT appointment this week. No new changes in the lungs yet. Hoping to see some in coming months with more recovery time 
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