Blogs

Day 592 - Worshiping Together

Our whole family was able to attend Mass together again for the first time in 22 months!

Days 587 & 588 - Drumroll, Please...

Everett's follow up trip to Duke was a complete whirlwind! It was truly wonderful to be able to see so many doctors, nurses, and staff who genuinely love our son and were amazed at Everett's physical transformation. Over the past 6 months, he's grown 6cm and lost all "the fluffiness" so he no longer looks like a marshmallow man...barely anyone even recognized him!

Day 580 - Strong and Spunky

Everett powered through multiple therapy sessions today. We are thrilled our little guy is getting to be so strong and spunky!

Next week, we will return to Duke for a follow-up. This visit will examine lung and heart function as well as endocrine and neuro-ophthalmology appts. We are especially excited to meet with his transplant team to discuss immune function, the status of Everett's red blood cell bursting issues, and next steps. 

Day 575 - All By Himself!

Over the past few months, we have noticed our little warrior gain so many new and amazing skills! After working specifically on kneeling during his PT session this afternoon, he was observed climbing up onto his therapy bench and playing while kneeling all by himself. We are so thankful for each and every small miracle!

Day 568 - On the Move!

We are so thankful Everett's therapy team is constantly providing suggestions and coordinating equipment for our little guy to test out and get his body moving. Everett loves chasing people (mostly Big Sisters) in the mobile stander!

Day 550 - Big Update

Sorry for the long gap since we've posted...Everett has been busy living and loving life!

Day 525 - Brand-New Wheels!

Fabulous weekly visit to Sinai today! Labs looked amazing, skin is clear of GVHD, and the team at Duke notified us this week that Everett could finally discontinue taking his anti-transplant rejection immunosuppressant medication (Imuran)! This is a major milestone in Everett's recovery from the transplant and means that his immune function should significantly improve over the next few months.

Another fun milestone...Everett's first attempt testing out a self-propelled wheelchair. He may not have gotten very far, but he was definitely proud of himself!

Day 516 - Fun-Filled Weekend

We hope everyone enjoyed President's Day Weekend as much as Everett did!

Day 506 - Goodbye, Toenails!

Goodbye, toenails, and goodbye, Sinai! Everett's toenail removal surgery this morning was a success! Despite the procedure and sedation, he remained his active and playful self all day, so the team felt confident that he was well enough to finally return home.

Day 505 - Charming Nurses

Another day of fluids, antibiotics, and charming nurses. Thankfully, all the cultures and tests have come back negative. While no one can ever be completely positive, the current theory is the fever on Tuesday was a symptom of the ingrown toenails. Surgery for their removal is scheduled for tomorrow morning at 7:30am. If everything goes well, we may be able to return home tomorrow evening. Thank you for your continued prayers and support!






 
 
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