Blogs

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!

Day 371 - GVHD Rash Defeated!

Great weekly clinic visit at Sinai today! Thankfully, his GVHD rash is totally gone! All of his labs are stable, and we've almost completely weaned off the steroid that prevents GVHD in his gut. He's experiencing a few periods of nausea throughout the day, but nothing too horrible.

We are looking forward to seeing our Duke team next week for Everett's 1-year posttransplant studies!

Day 366 - ONE YEAR ANNIVERSARY!

It's officially been 1 year since Everett received a transplant of unrelated umbilical cord blood at Duke University Hospital in an attempt to reduce the challenging side effects of Pelizaeus-Merzbacher Disease. It's certainly been a roller coaster, but we are so blessed for this tremendous opportunity! Thank you to everyone who has supported Everett and our family throughout this journey!

Day 365 - A Stepping Stone

We are so thrilled to be able to share another milestone! It may not seem like much, but after the year he's endured, Everett putting his fingers in his mouth and sucking on them is a very big deal. This is a great stepping stone for him to be able to feed himself in the future!

Please don't forget to post a picture and/or message directly onto the Team Everett page in honor of ONE YEAR TRANSPLANT anniversary tomorrow!

Day 364 - Sinai Visit

Weekly clinic visit to Sinai went great! Thankfully, his GVHD rash has improved, labs are looking good, and the team worked very hard to make sure we weren't waiting very long for the medicine (like last week).

Day 263 - Occupational Therapy

Everett has no idea that occupational therapy isn't just play time.

Day 362 - Home For 1 Month!

It's officially been one month since Everett was able to return home and we have been blessed to witness wonderful changes and growth each day!






 
 
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