Mid-March Update on Bryce

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Krabbe Disease … we wish more than anything you didn’t exist. These past few weeks have been very tough on Kyle and Jenna, but especially on sweet Bryce. It’s become very clear that the disease is progressing, though how much exactly we don’t know.

Once they returned from Pittsburgh in January, Bryce plateaued once they got his medications in place, which is what the team out there predicted would happen. His movement has been limited since then: He really only moves his arms and legs when he’s experiencing a nerve or muscle spasm: It’s like he’s paralyzed from the neck down.

Since about the first week of March, though, he has been a bit more irritable and has started vomiting after many of his meals. They’ve speculated that it could be because they’re feeding him too much or too fast; that it could be about how he’s positioned and how soon they lay him down after he eats, etc. But there isn’t much consistency to when it happens. That’s what makes them think the disease progressing.

With this in mind, they are anxious to move forward with the Nissen Fundoplication procedure, which will prevent reflux and aspiration: Because Bryce can no longer swallow on his own, there is a greater chance of this happening. Also, due to Bryce’s floppy epiglottis, there’s a greater chance of him getting pneumonia as a result of the vomiting: Because his epiglottis doesn’t seal, every time he gets sick, the bacteria builds up on the epiglottis and could cause infection in his lungs. They are meeting with a doctor at the UW-Children’s Hospital on Monday and hope to move forward with the procedure within a week or so.

Bryce’s vision has also been affected, something that Kyle and Jenna began to notice a couple of weeks ago. He is no longer tracking people across the room or focusing. It’s almost as if his vision is delayed – like it takes a while for things to become visible to him. This change is devastating …

They’re not sure if it’s because of the medication or just the disease, but Bryce is sleeping a lot more now. His digestion is also slow, a result of his lack of movement; they are giving him a supplement with two of his feedings to help him have more regular bowel movements.

In spite of all these things, Kyle and Jenna have been experiencing life with Bryce: They spent a week in Mosinee with the Heckendorf family; they spent the weekend here in Minnesota and went to the Sea Life Aquarium at the Mall of America; yesterday, he laid in his first snow pile 🙂 These among many other things …

We ask for your continued prayers for Bryce, Jenna, and Kyle. Your love, strength, and positivity are what is carrying them, and all of us, through this … Thank you!

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