Weekend Travel

Big Kid Weekend Travels

Our 8-year-old got to attend a younger boys' father-son retreat last month and now it was our 14-year-old's opportunity to attend the older boys' retreat. We definitely recommend these retreats put on by St. Joseph's Farm.

Our two girls are great friends with the farm couple's oldest and only daughter (followed by six boys!), so they were invited to attend, staying far out of sight of the boys' retreat, of course.

A wonderful time was had by all and somehow the gang even managed to return without any stowaway kittens hidden in their pockets.

This marked a milestone in that I stayed home alone with the three littlest boys and no big helpers for the first time since Thomas's discharge from the hospital two and a half months ago. Thomas was having some significant abdominal pain, which made me nervous, so I arranged with a neighbor that she would be my emergency babysitter and I could call her night or day . . . which, thanks be to God, I never had to do.

First Aquarium

Back at home, I took Thomas (and his brothers) to their first ever aquarium! Thomas adores all creatures that live in the ocean, so this was very exciting, even if I knew this was a small aquarium and pales in comparison to Atlanta or Charleston, whose aquariums the older siblings have patronized. I could only make such an outing safe and possible by taking another adult with me because Thomas's needs arise urgently, and I was so glad it worked out.

So excited to go!

Mama: "You know, honey, on the drive home would be a good time to close your eyes."

One Certain Boy: "No! I'm not tired! I'm going to stay awake the whole time!"

Five minutes later . . . 

Hustle Bustle Weekdays

Lessons in piano, violin, and voice . . . still chugging through math for the year . . . swimming . . . many NERF battles this week . . . Tom's physical therapy . . . Wednesday Mass . . . hockey league . . . . 

Three of the kids had jobs working for neighbors this week (and into next): house sitting (extensive daily watering, newspaper, mail, packages), repairing porch latticework, painting a garden box, and painting a stairway.

Last meeting of Fraternus: Accolades ceremony

Young ladies' birthday luncheon

Four of the kids participated in this week's online class on reptiles by Our Journey Westward.

Heat experiment with spiral snake

I am excited to be baking from a book called Naturally Sweet: recipes created by America's Test Kitchen that are 30-50% less sugar. So many lower-sugar recipes use obscure, expensive ingredients and/or are simultaneously very "health nutty"-- free of gluten, eggs, fat, etc. -- when Thomas does not need to exclude other ingredients. Naturally Sweet explains in its introductory chapter the science behind baking with sugar and all the changes at the molecular level that happen when various changes are made to recipes: I love learning this! Our first cookies were fabulous and you'd never know they were reduced anything, yet they contained only 7 g sugar.

Medical Updates

We noticed this week that Thomas's puffy face resulting from nearly eight months of steroids is back to normal or nearly so. He still has some hirsutism, but it is lessening. If all goes according to schedule (which it has not so far!), he will be fully weaned off of hydrocortisone in six more weeks, and then only need it for stress dosing when ill, in an accident, or experiencing surgery. He has another Cortrosyn Stim Test scheduled for August to see if his remaining adrenal gland can produce enough cortisol for him.

Photo right after diagnosis in June 2020

April 2021: exhausted and suffering, having been on steroids for five months

April 2021: Asleep

June 2021

Gastroenterology

Thomas was experiencing abdominal pain and other symptoms Wednesday through Monday, so I was in daily communication with his surgeon, but his GI team didn't have any openings for a month . . . among all their providers . . . at all their locations. Finally by Monday, we decided we just wanted him to be seen by somebody, so we made an appointment with his pediatrician for just one hour later after we called. A few minutes later, the Pediatrician's nurse called and asked, "Dr. R----- wants to know why you aren't taking Thomas to his surgeon or gastroenterologist and whether they know about these symptoms." I laughed and laughed, given how much I had tried to have him seen by his specialists.

Still, all was not lost: We saw the pediatrician who said he would see what strings he could pull. As we drove home from the appointment, my phone rang: the pediatrician's office had called GI and obtained an appointment for us the very next morning first thing.

However, by Tuesday morning, Thomas seemed on the mend from whatever had caused distress for six days. It was nothing communicable, just his reconstruction, so these unexpected and mysterious symptoms disrupting his life are probably something we all have to become accustomed to.

Nephrology

Thomas met with Nephrology this week and we are ever closer to weaning down from three to one medication for hypertension. I'm administering three drug tapers simultaneously, taking daily blood pressure measurements at home and coordinating with three doctors throughout. This requires much mental energy, careful note-taking, and math.