BStrong for Bryce

Surgery Scheduled for THIS Friday

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Bryce woke up just in time for the end of the Badger game this past Saturday! What a bummer that it was such a heartbreaker. Love this sweet boy so much XOXOX
Bryce woke up just in time for the end of the Badger game this past Saturday! What a bummer that it was such a heartbreaker. Love this sweet boy so much XOXOX

We’re asking for lots of prayers, positivity, and strength for Bryce, Kyle, and Jenna this week as they prepare for his surgery, which they’ve scheduled for Friday morning. The multi-part procedure will take place at the UW-Children’s Hospital in Madison, and will include the following:

  • Nissen Fundoplication: The surgeon will create an anti-reflux valve at the bottom of Bryce’s esophagus so he will be able to keep his meals down; because Bryce can no longer swallow, this will also prevent the risk of aspiration.
  • G-Tube Replacement: A surgeon will be replacing Bryce’s current g-tube button with a more modern version (when Jenna and Kyle had the surgery consultation at the UW, the surgeons told them they hadn’t used the kind Bryce currently has in nearly eight years …)
  • Fixing Bryce’s floppy epiglottis: A surgeon will be tightening Bryce’s epiglottis, which should help him breathe a little easier and reduce the amount of energy he’s expending by simply breathing.

Because there are three different surgeons involved (I think), it took quite a bit of coordination to get this scheduled, but we’re all relieved that they were able to get it scheduled for this week. Bryce has been vomiting about once a day, and the sooner they can do this and keep all of his food and medicine in him, the better. If everything goes as planned, Bryce may only have to be in the hospital for one night. He’ll have lots of company when he’s there in Mommy and Daddy, and his Grandmas and Grandpas. 

In preparation for the surgery, Kyle and Jenna took Bryce in last week for a couple of pre-op appointments. They had his oxygen levels checked as his doctor in Dodgeville was a little concerned with his breathing patterns. When he’s relaxed, his O2 as at 98%, which is great; when he gets upset and agitated, however, his O2 drops to about 70% — it’s like he’s holding his breath. Because his levels are fine the majority of the time, they are not at the point of putting him on any additional oxygen support. 

I think that’s it for now … I will be keeping everyone posted on the surgery here on Friday and throughout the weekend, so please be sure to check here for updates. Thank you so much for all the love and support 🙂

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Grateful: The Sky Is Blue

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On behalf of Kyle, Jenna, Bryce, and the Heckendorf and Kuenster families, THANK YOU for coming out yesterday and making The Sky Is Blue Benefit a HUGE success. What an event for sweet Bryce … you all showed such love, support, strength, and generosity. You lifted us up in a way that none of us could have expected: It was overwhelming and amazing.

I have to start with the organizers: Aunt Nikki Nemitz and cousin Trisha Gage drove out to my parents’ home shortly after Bryce’s diagnosis back in November and ran the idea of a benefit passed Jenna and Kyle. They then rallied the troops — Aunt Peg Rewey, Aunt Cindy Ritter, Aunt Angie Redman and so many others —  and they were able to create a meaningful, beautiful event yesterday, one that brought hundreds of us together around one little boy and his family. What would we do without your unwavering love, commitment, and support??

To all the sponsors, volunteers, and donors — and there were MANY of you: Thank you for giving so selflessly and thoughtfully, whether it was food, your time, or of one of HUNDREDS of beautiful treasures that raised proceeds to help cover Bryce’s care and raise awareness about this awful disease. You made things run smoothly, and all of us went home with some pretty amazing memories, not to mention items, that will forever be remembered as part of The Sky Is Blue for Bryce …

To Tim Slack and crew: You helped build energy and generosity of spirit in that building last night. Thank you for that, and for making the auction portion of the event run so smoothly. I kept thinking there was no way it wouldn’t be chaotic — but it was darn efficient.

To all of our family, friends, and the community at large: We are blessed to be surrounded by such amazing people. Thank you for coming out yesterday — despite the weather, despite basketball games and wrestling matches, despite all the other things happening in your own lives. You came from near and far to be there for Kyle, Jenna, and Bryce, and they are lucky to have you in their lives …

We don’t know what the weeks and months ahead hold for Bryce, but we are forever grateful to have each other and all of you to lean on in this most challenging and heartbreaking of times. Thank you for just being there.

-Auntie Jamie

“Life is brutal. But it’s also beautiful. Brutiful, I call it. Life’s brutal and beautiful are woven together so tightly that they can’t be separated. Reject the brutal, reject the beauty. So now I embrace both, and I live well and hard and real.” —Glennon Melton, Momastery.com

January Comes to a Close

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Bryce's crazy bath time hair (January 26, 2014)
Bryce’s crazy bath time hair (January 26, 2014)

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.