Blogs

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.

Day 490 - Growth Spurt

Day 483 - More Med Weaning!

Today marks 5 months since Everett moved back home to Maryland. The time has flown by, and we have thoroughly enjoyed living as a family again. Everett adores playing with his big sisters each day and we've noticed a dramatic improvement in his mood and his gross and fine motor skills since his return.

Day 478 - Port Replacement Part Deux

Port replacement surgery this afternoon went well. Everett was a total champ and didn't even cry after waking up from anesthesia. We hope this one stays put so this procedure will never need to be repeated again. Thanks for your continued prayers and support!

Day 476 - Best Labs Ever, but More Surgery

Today's labs looked the absolute best they've ever been! It's so amazing to see how far our little guy has come! Unfortunately, our celebration was short lived because we learned that Everett's new port has completely moved out of place and will need to be replaced AGAIN. Surgery should be scheduled for next week. We are obviously disappointed, but certainly thankful Everett is not sick. Thank you for your continued prayers and support!

Day 469 - More Steroid Reduction!

Weekly clinic visit went great! Everett's Primary Physician at Sinai returned after being away for several weeks and was thrilled to see how much our little guy has changed and grown. Labs continue to remain stable, so we may begin to wean his steroid medication a little more. Yay!

Day 466 - On the Move in the New Year!

Happy New Year! Thank you for continuing to provide support and prayers throughout 2017! Everett is certainly starting the year off right...he is officially "on the move!"






 
 
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