It’s hard to believe that in two days, it will be a month since we learned of Bryce’s diagnosis. Kyle and Jenna are taking it one day at a time, and it’s not easy. Especially this time of year. As Jenna said to me tonight, it feels surreal that the world continues to turn, people continue to live their lives per usual, when their world has been turned upside down. It’s amazing how fragile life is. Somehow, though, days are going by …
Here’s what they’ve been up to since Kyle’s last entry:
- After a few days at home in Dodgeville, Kyle, Jenna and Bryce headed back to the farm to keep Papa Tom company as he continues to recover from his open-heart surgery. They swung by Dr. Steffanie’s on the way, and they all got adjusted (Mom and Dad need — and deserve — a little of that amazing TLC that Steffanie offers, too).
- As of last Thursday, they received all of the nutritional supplements that Dr. Flynn recommended, and they’ve been following his regimen since.
- At Dr. Steffanie’s recommendation, Jenna and Kyle took Bryce to see a cranial-sacral therapist in Madison on Saturday morning. Because of how tense he is, the therapist couldn’t do much other than offer some exercises and suggestions for helping Bryce relax. He now has little foam balls to hold in his hands (so they’re not clenched); she also suggested a baby hammock for sleep, as it conforms to his little body vs. him trying to conform to his bed or rock ‘n play.
- On Monday, they went back to Madison for a follow-up with the GI doctor who put in Bryce’s G-tube button — that’s looking great. It’s a relief to Jenna and Kyle to be able to supplement all of Bryce’s feedings through that. Keeping him well-nourished is a top priority.
- Today, the physical therapist and occupational therapist came by for initial assessments. They’ll begin working with Bryce regularly in the new year.
- After connecting with other families with children with Krabbe Disease, Jenna and Kyle learned about Dr. Marie Escolar, a doctor who specializes in the disease (both in terms of care and research). She is THE go-to expert and sees patients from all over the world. In early January, they will be traveling to Pittsburg to have Bryce seen. Dr. Escolar’s approach is proactive vs. reactive, and their care protocol is well established.
We’ll never understand why this is happening to Bryce, but we’re doing our very best to enjoy every moment we have with him. Thank you again to all of you who are continuously sending thoughts and prayers to Kyle, Jenna and Bryce, and for all of the other things you have done to show your love and support. No words can express our gratitude.