Day +82: Kiira’s clinic appointment went well today. Her WBC count has gone up some and while we wait for her CMV (virus) results, we’re sticking to our plan to stay off the IV antiviral and restarting an oral one to keep her immune system up. I’m already making preparations to head home in about 3 weeks. We have several more things to get through, including a swallow study on Wednesday. Kiira has been choking on the tiniest bits of food. She isn’t drooling and I’m not seeing blood in her mouth, but I’m wondering if there’s some narrowing in her throat or upper esophagus that can’t be seen by an endoscope. We haven’t done one since she was 4 months old and I’m hoping her throat is clear, but we want to be sure before we head home. Unfortunately this is extremely common in EB due to blistering and narrowing of the digestive tract and I’m beyond thankful it hasn’t been an issue for us yet. Stopping the internal damage was an enormous reason for us to do a BMT so early for Kiira. Once the damage is done, its irreversible.
My aunt is here visiting so we enjoyed an outing to Minnehaha Falls. Kiira wanted to see the waterfall so much that she actually wore her mask for about 20 minutes. I was shocked! Thank goodness for the stroller rain cover, which gives us the freedom to go for walks without the fight or discomfort of a mask.
We appreciate your continued prayers as we know they’re working. Thank you!