Laura's blog

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!

Day 504 - No More Fever

Our happy guy has spent the entire day charming all the nurses and trying (nearly successfully) to climb out of the crib!

No fever since yesterday, but he's continuing to receive fluids, broad-spectrum antibiotics, and hydrocortisone while we wait for cultures to return. Hoping that nothing shows up and to be discharged tomorrow because this little guy really, really misses the big sisters!

Day 503 - Sick, but Okay

Everett was admitted to the Children's Hospital at Sinai this evening for a fever of 100.9. Thankfully, Tylenol worked quickly and he perked right up, but they have taken cultures and are giving him IV fluids and antibiotics as a precaution.

This is the first time Everett has been sick since his return to Maryland, and we are grateful his immune function has vastly improved over the past few months. We are hopeful this means he will recover quickly.

Day 502 - Milestone Reached!

We are very, very blessed that Everett has been such a great sleeper since returning to Maryland. However, this evening he continued to cry even an hour after bed time. When Mommy went in to check on him, she found him standing in the crib and close to falling out!

Day 497 - Mostly Awesome Progress!

Weekly clinic visit went great! Labs continue to be stable, which is a blessing since we are weaning the immunosuppressant and the super expensive Ecluzimab. We were also pleasantly surprised that Sinai allowed us to run his IVIG infusion for half the time (about 3 hours vs. 6 hours) so our visit today was dramatically shorter than expected.

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