Day 497 - Mostly Awesome Progress!

Weekly clinic visit went great! Labs continue to be stable, which is a blessing since we are weaning the immunosuppressant and the super expensive Ecluzimab. We were also pleasantly surprised that Sinai allowed us to run his IVIG infusion for half the time (about 3 hours vs. 6 hours) so our visit today was dramatically shorter than expected.

Unfortunately, our little guy has developed ingrown toenails on both feet. This is a common problem for both transplant kiddos and children who regularly wear AFOs, so Everett was definitely at risk. In the grand scheme of things, ingrown toenails are so insignificant compared to everything else he has endured, but it's very painful for him and could develop into a serious infection. Since he is still unable to visit an outpatient podiatry office due to his weakened immune system, we are hopeful the staff at Sinai can arrange for a podiatrist to see him next week while he is in clinic. In the meantime, we are soaking his feet 4 times a day (which Everett hates) and we added an even stronger antibiotic to his medication list.

On the plus side, Everett has been doing wonderful things during physical therapy and occupational therapy lately. Because Mommy and Daddy miss out on most therapies while they are at work, Grandma is kind enough to capture lots of his progress. Here are just a few snippets of our little guys new tricks.

Thank you for your continued support and prayers!

 
 

 

 

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