A Week of This and That

This was a very busy week "in between things": cleaning up from the birthday festivities last weekend and preparing for some Big Fun in the following week.

Highlights

John aced his Driver's Ed class!

My husband had the idea and installed a hook over my sink where I prepare Thomas's tube feeding before attaching it to his IV pole. Yay! 

Thomas (6) and Margaret (10) have been creating much art this week. I would just love to get them an art teacher.

Bald eagle by Thomas (6)

Sketch by Margaret (10)

After losing our music teachers last winter, I think I have finally, finally found a solution for us. We are booked for the oldest two kids to take piano and the two girls to take violin at an excellent music school just 6 miles from our home. Meanwhile, we will continue having an in-home teacher for the other three younger students taking piano. Everything is arranged for Fridays, which is my goal for the year: the kids will be at in-person homeschool hybrid on Mondays and Thursdays, and I want to keep Tuesdays and Wednesdays entirely free for homeschooling. Finding music teachers has been a project of the last two months, so this feels like an accomplishment!

Meanwhile, Insomnia rears its ugly head again and torments me, so I'm running on absolute fumes.

Medical Updates

I try not to schedule multiple medical appointments for Thomas on the same day, but some times it works out that way, like four visits (in the same medical building) last week. This week, we had two visits across town from each other on the same day. For these appointments with specialists, I wake up at 5:30 and do data analysis and preparations, printing out sheets of information for each doctor. Chris is the amazing creating of graphs when I tell him my vision for the data I want to present.

On this day, I was gone with Thomas from 10:30 a.m. to 1:30 p.m. seeing the pediatrician (and picking up drive-through on the way home) and then, after only 45 minutes at home, gone from 2:15 to 4:30 seeing the surgeon.

Tuckered out boy in between doctors' appointments

There is so, so much to say from the Big Picture Planning session with the surgeon, but probably most not for public consumption (however, friends are totally welcome to ask me questions!). Too many details, too many unknowns.

August and September will be busy amidst starting the school year: In the last two weeks of August, Thomas has an endocrinology test and visits with gastroenterology and nephrology. He will have his MIBG scan for oncology (which means appointments at the hospital three days in succession). Also, we will have one more visit with the surgeon to have Thomas's mic-key button swapped out (every three months) and have more discussion and planning. Then we will very likely take Thomas in for one or two imaging studies in September: an endoscopy from above to check for esophagitis and a contrast dye study from his J tube to see how things are flowing.

Then we will have much needed information.

Many of you who run into me say you are still praying for Thomas and let me tell you how grateful we are. This whole next year is probably still going to be a real challenge (if no longer a life-and-death battle).