It’s hard to believe it’s been more than two months since we learned of Bryce’s diagnosis already. Sometimes I wonder how we’ve gotten through that many days — and if I feel that way, I can’t imagine how Jenna and Kyle are doing it. It’s a reminder that life continues to go on regardless …
Since my last update here, Kyle and Jenna have started the process of meeting with doctors to discuss the procedures they’re considering for Bryce. They won’t do anything until March at the earliest, simply because they can’t replace his G-tube button until then (it needs three months to heal properly), and they want to do all the surgeries at once so he doesn’t have to go through all of that and be in and out of the hospital multiple times. Whether they decide to do all of the procedures or not will likely depend on how much the disease progresses between now and then.
The good news is that Bryce’s meds are working, and he’s quite a bit calmer than he was a month ago. They’re actually getting more coos out of him now than then — and a few more smiles, too! It’s SO good for his Mommy and Daddy to see that beautiful smile and his eyes light up in the midst of all of this. They’ve also been able to lay him down for naps more frequently, though they don’t mind holding him as much as they can (per Dr. Escolar, a lot of children with Krabbe go through a phase where they don’t want to be held). And a few more of us are getting to hold him as well.
Last weekend was the #BStrong for Bryce Ice Fishery in Bagley, and despite the frigid temps and wind, so many people showed up and gave their support. Jenna and Kyle asked me to share this message, which they originally posted to Facebook, for all of you who may not be over on that platform:
Kyle and I would like to thank everyone who came out to support Bryce and our family yesterday. We are so grateful for everything everyone is doing to support us! We would especially like to thank Mike and Frankie for organizing the event, as well as everyone who volunteered their time and/or made donations to make it happen. We feel so blessed to have such an amazing support system and we would not make it through each day without all of you! We ask that you continue to keep Bryce in your thoughts and prayers as he continues to fight this fight! Thank you all!
Please remember to mark your calendars for one month from tomorrow, for the Sky Is Blue Benefit for Bryce on March 1. In the meantime, please keep your thoughts, prayers, and positivity coming for our sweet Bryce.