Day 490 - Growth Spurt

Weekly clinic visit today was brief, and everything went great! Thankfully, Everett seems to be responding well to weaning the immune suppressant anti-transplant rejection medication. Only a mild rash has appeared, and it is being managed with creams. We anticipated he would need a 6-hour IVIG infusion this afternoon (to help boost his immune function), but his IGG levels did not decline over the past 2 weeks as quickly as expected. This definitely means his immune function is certainly improving!

It will be several weeks before we know how his body is responding to weaning the super-expensive ecluzimab, but we are hopeful that his kidneys will stay healthy and his red blood cells do not begin bursting again.

And our little guy is growing again! For the longest time, Everett has remained the same height. This week, the PT needed to adjust his stander to compensate for his new height, he was measured for new AFOs (ankle foot orthotics), and during his appointment today the nurse checked his height twice because he was measuring 2cm larger than last month!

Thank you for your continued prayers and support!


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