05/24/2026
My had a really good day Friday. The best we have seen them since I can’t remember when. My fingers were crossed that this is a sign that the IB STIM was kicking in early.
However, that’s not the case. In the middle of the night Friday, the pain came back with vengeance. They have been in the most pain they’ve had since being hospitalized for a week in March.
We had attempted to take the other two kiddos and their friends camping for the weekend. A trip we’d had planned for a year with friends. The campground is just 5 miles/15 minutes from our house, so we knew we could attempt it and also be home asap if needed. My was having a hard time even getting out of bed yesterday, so home Daniel and I came. There’s not much we can do without having My hospitalized (and really that’s where they should be), but My doesn’t want to go in. This coming week is their last week of school. Since they will be gone the following week to have follow-ups in Ohio, all their finals and school wrap up have been moved to this week. I stayed overnight with My and am continuing to try to help get them as comfortable as possible, as well as get any amount of calories in them. They are just in a too much pain to eat, and it also makes them extremely nauseous. Daniel spent the night at the campground, so the twins can still enjoy their weekend.
We have our last round of IB STIM on Wednesday, and from there hopefully My can get through the week. We fly out to Ohio a week from today for 4 more appointments.
Mylin’s Angry Pancreas 
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