Laura's blog

Day 434 - Stability

Weekly clinic appointment at Sinai went great! Everett received his infusion of ecluzimab and lab results were nearly identical to those collected last week, so we are thankful for stability! Our primary doctor at Sinai is planning to contact Dr.Prasad at Duke to discuss potentially weaning the ecluzimab a little more, which is certainly very exciting (and a little scary) for us. Thank you for your continued support and prayers!

It's Giving Tuesday! COTA Is Matching Donations!

Today, November 29th, is Giving Tuesday! In honor of this day dedicated to philanthropy, COTA is matching all donations given today dollar by dollar!

If you were planning on donating to COTA in honor of our Little Warrior, Everett, today would be a fantastic day!

Thank you all so much for your continued support!

Day 427 - Thankful for Progress!

Our little guy has had a fantastic week! He is getting stronger each and every day. A few highlights include: Trying to sit up on his own, prop-sitting for about 15-20 minutes at a single stretch, standing while leaning against something for a few minutes, drinking a few sips of water from a straw, and taking several bites of yogurt. And today's lab results looked stable too.

We truly have so much to be thankful for! Happy Thanksgiving!

Day 420 - Back in Business!

Everett and Daddy spent the entire day (12 hours) in the Children's Hospital at Sinai for the weekly clinic checkup and scheduled infusions of ecluzimab and IVIG.

Day 413 - Slowing Down

Weekly clinic visit at Sinai went OK. Unfortunately, we need to proceed significantly slower than expected while weaning off medications because the GVH rash, nausea/vomiting return with each reduction. However, we are encouraged to see minor improvements in his lab results!

Day 404 - Our Little Jack-O-Lantern

Happy Halloween!

Day 392 - Long Sinai Visit

It was a long visit today at Sinai Hospital so Everett could receive his biweekly infusion of ecluzimab and IVIG to boost his weak immune system.

Day 378 - Final Day Posttransplant Studies

The final day of Everett's 1-year posttransplant studies went very well! In addition to a developmental evaluation and follow-up eye exam (from his surgery in August), Everett was able to meet with his Duke primary team. Everyone was thrilled to see our little guy and pleasantly surprised with the improvements in strength, head control, and social interaction since they last saw him 6 weeks ago. Looking forward to many more improvements when we return again in 6 months!

Day 377 - Second Day Posttransplant Studies

The second day of Everett's 1-year posttransplant studies was quite the whirlwind with a sedated MRI, BAER, VEP, EEG, lumbar puncture, appt with the neurosurgeon, and another appointment with the neurologist. As usual, Everett was a real trooper!

Day 376 - Posttransplant Studies Day 1

The first day of Everett's 1-year posttransplant studies at Duke went very well. Echocardiogram, chest x-ray, and pulmonary lung function test were completed, but the very best part was seeing some of our favorite nurses again!

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