Blogs

Day 465 - Community Support

We would like to extend our greatest appreciation to Gary Weddle, Jack Lloyd, Chaz Spalding and Rev. Mike Beiber from the Mount Zion United Methodist Church in Myersville, MD. These gentlemen braved the cold this morning to transplant our landscaping from the front of our home in order to clear space for a wheelchair accessible ramp for Everett.

Day 454 - Surgery Success!...Mostly

Initially, we believed today's port replacement surgery went well. Everett was a total champ and smiling and giggling afterwards. He didn't even need additional pain meds during recovery.

Day 449 - Port Replacement

Unfortunately, Everett's port needs to be replaced. The medical team took one x-ray and immediately knew...no further study was necessary. Everett was in the radiology room for less than a minute. Since our little guy has grown so much over the past year, the end of the catheter has migrated about 3 inches from where it's supposed to be. We are hoping to be able to schedule surgery for next week at Sinai.

Thank you for your continued support and prayers!

Day 448 - Overnight Stay

The weekly clinic visit has turned into an overnight stay. Everett's port has stopped working, so the radiology dept will need to investigate in the morning to determine the problem. We are hopeful that the port will not need to be replaced and the team can get it working again. Even though it's been a frustrating day, we are incredibly thankful that Everett was not admitted because he is ill.

Thank you for your continued prayers and support!

Day 434 - Stability

Weekly clinic appointment at Sinai went great! Everett received his infusion of ecluzimab and lab results were nearly identical to those collected last week, so we are thankful for stability! Our primary doctor at Sinai is planning to contact Dr.Prasad at Duke to discuss potentially weaning the ecluzimab a little more, which is certainly very exciting (and a little scary) for us. Thank you for your continued support and prayers!

It's Giving Tuesday! COTA Is Matching Donations!

Today, November 29th, is Giving Tuesday! In honor of this day dedicated to philanthropy, COTA is matching all donations given today dollar by dollar!

If you were planning on donating to COTA in honor of our Little Warrior, Everett, today would be a fantastic day!

Thank you all so much for your continued support!

Day 427 - Thankful for Progress!

Our little guy has had a fantastic week! He is getting stronger each and every day. A few highlights include: Trying to sit up on his own, prop-sitting for about 15-20 minutes at a single stretch, standing while leaning against something for a few minutes, drinking a few sips of water from a straw, and taking several bites of yogurt. And today's lab results looked stable too.

We truly have so much to be thankful for! Happy Thanksgiving!

Day 420 - Back in Business!

Everett and Daddy spent the entire day (12 hours) in the Children's Hospital at Sinai for the weekly clinic checkup and scheduled infusions of ecluzimab and IVIG.

Day 413 - Slowing Down

Weekly clinic visit at Sinai went OK. Unfortunately, we need to proceed significantly slower than expected while weaning off medications because the GVH rash, nausea/vomiting return with each reduction. However, we are encouraged to see minor improvements in his lab results!

Day 404 - Our Little Jack-O-Lantern

Happy Halloween!






 
 
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