Laura's blog

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!


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!

Day 361 - Bouncy House Play

Bouncy house and swing in one is good!

Day 360 - Pooped From Playing Hard

Everett definitely played hard today. You can't tell, but he's actually sleeping while big sisters are making tons of noise. It's so good to be home!!!

Day 359 - Happy Bath Time!

Unfortunately, Everett was not able to keep down his morning meal today and seemed nauseous for most of the day. We are very concerned, but hopeful that the GVHD (graft vs. host disease) is not attacking his gut.

However, a bath seemed to perk him right up and he loved splashing and kicking as hard as he could.

Day 358 - A Boring Day

After our 14-hour visit to Sinai yesterday, it's great to have a boring day with nothing notable to share! We certainly hope more days like this are in Everett's future!

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