On the agenda for today was snorkeling near Fort Lauderdale, but it was too windy and it was cancelled. Mayreen and I did some searching for a plan B, and Mayreen (a.k.a. "Ant May May", yes I know it's usually spelled "Aunt", but Eli doesn't know that and Mayreen really loves to be called Ant) …
Continue reading Eli’s Fun Fabulous Fantastic Florida Excursion and Snorkeling Day #3
Florida is wet. Very, very wet. It reminds me of Panama, sudden downpours mixed with sunshine. Kinda like my life the last couple years, actually. But I digress. We started the day checking out of the hotel, since the plan, after spending the day at Universal Studios, was to drive back south to our next …
Continue reading Eli’s Fun Fabulous Fantastic Florida Excursion and Snorkeling Day #2
We spent the day flying across the country, complete with Eli's duct tape and paracord (who knows when you need to escape in a pinch). In fact, we were on the verge of whipping out the adventuring supplies when we had to evacuate the rental car facility. After the suspicious activity was dealt with, we …
Continue reading Eli’s Fun Fabulous Fantastic Florida Excursion and Snorkeling Day #1
Me waiting while Adam is taken to imaging When I was writing the last post, I was sitting in the emergency department at our local hospital with Adam, trying not to use all my phone battery. It was Friday and the day had started off pretty typically. At 8am my alarm went off reminding me …
Eli is pretty amazing. His three weeks of daily radiation began on Monday. He's really had a great attitude about it. He had a few hard days in August, but once he arranged for regular VR play time while at Primary Children's for clinic visits, he's been much happier. Before one of his trips up …
We usually think of being photogenic as looking good on camera. What do you call someone who looks good on scans? Eli is having his MRI now and negotiated with the nurse when she would put in his IV for the contrast. During said negotiations, she mentioned how good he is at getting his MRIs. …
In order to reduce the work of celebrating the kids' birthdays each year, we only do birthday parties with friends on even number ages (thanks for the idea, Mom and Dad). It also happens that 7 of our 9 kids were born in an even number year, so we have lots of birthday parties to …
I spent most of today dealing with medical bills that have accumulated in the last month and a half. I had been too busy doing fun things with Eli and the kids and researching treatment options to bother with such mundane concerns. The biggest frustration was trying to get some billing mixups fixed, so I …
Eli's bucket list Progress has been made on the list of things Eli wants to do as well as on his workshop, courtesy of Make-A-Wish. While they are providing the structure and many of the accoutrements Eli wants on the inside, they do have a budget, so not everything he wants will be included. Ground …
While waiting for test results to guide our treatment decision making, we have been making progress on Eli's list of things he wants to do. Basically it's his bucket list, which, as it so happens, I had the foresight to start work on many months ago, since, it appears, foresight as to where this journey …
Eli The Boss 