Hello COTA for E and J friends family and supporters. It’s been a while since we’ve been able to blog so we have lots to catch you up on!

First of all, Ali, Dave, and the boys are doing pretty well. Both boys now have their central lines out, and Eli got his G-tube out today! They even made an event out of it, and Eli got the blow it up like a balloon until it popped! Pop!

On February 28th we celebrated Dave’s Birthday, which coincides with world rare disease day, as well as the amazing milestone of 100 days of new bone marrow for Eli and Jacob! It’s so wonderful that they reached this milestone without any large complications. This bodes very well for their recovery and future with their new bone marrow! If you haven’t seen it – check out this amazing celebratory video on facebook that our Community Coordinator made. 

In fact, the Kulmans are doing so well that the family will likely relocate back to their Falls Church home at the start of April!!! 

Now before you get too excited, know that they will still need to stay isolated for sometime. So while this doesn’t mean kid play dates yet, it will still be so nice for them to all be in the comfort of their own home. Rather than weekly check ups they will go back to CHOP every other week or so for appointments.

They got a brief taste of Falls Church this last week when the family drove down just so Ali and Dave could get their first Covid vaccines! And I mean a literal taste – they were able to get take out  from their favorite restaurant, Open Road! It was a one day crazy trip, but we are so glad that Ali and Dave were eligible to get this first shot.

Jacob continues to progress with physical therapy. Ali reports that he is improving on the stairs. It takes time for their bodies to build back strength and stamina as well as muscle tone and balance. (Dave likes to particpate in the PT exercises too…) 

Both boys are doing well in virtual school, which they will continue to do once they are back home. They also enjoy spending time with their temple family at virtual religious school on Sunday mornings. 

Recently we were able to reach out to Eli and Jacobs awesome school teachers who had glowing things to say about them: 

Jacob’s teacher says, “It is a pleasure to see Jacob’s face pop up on our screens. He brings a wonderful sense of humor to our lessons and enjoys participating in class discussions!  Each day, we enjoy hearing Jacob’s weather report as we graph it and compare it to the weather in Falls Church!  A highlight for me is seeing him light up when he shares his expert knowledge of animals and animal habitats!!” 

Eli’s teacher writes, “Eli is such a pleasure!  He joins our video conference each day with a cheerful smile and a thoughtful question!  His optimism for learning shines through as he writes about literature, participates in class discussions, and works collaboratively on projects.”

 

It’s been a strange year with virual school for the boys and our whole community, but on the plus side it was nice to have the ability to join virtual class with their classmates and friends these past few months. 

It might be a while before we blog again, but will continue to update on Facebook with any big news.