Ready to travel!

Father's Day on the Road

We travelled to Atlanta for Father's Day with Chris' dad, as did the Texan brother and his family, which made the three surviving brothers all together with Pop-Pops: a very special gathering.

Milestone alert: Thomas is newly strong enough that he can walk down the hall wearing his backpack containing his clothing for the weekend!

Traveling with Thomas means taking a lot of medication, as well as his tube feeding supplies. I haven't flubbed up yet, but live with nerves that I will forget something critical.

Thomas's liquid medications

I came close to big consequences this time when I miscalculated one medication which I thought I had enough of for another week, but it turned out I was going to run out on the day of our departure. This is a specialty medication which we order from the actual pharmaceutical manufacturer, so I spoke with the company on Wednesday evening and they agreed to FedEx the product overnight to arrive at Pop-Pop's home on Friday morning, where we would be arriving later that afternoon. I was one nervous mama until I had that box in my hand because, while some of his medications could be skipped, this is not one of them.

Thomas's pill medications

Pop-Pops opening his gift

As I watched Chris opening Thomas's Father's Day card, I was struck with the magnitude of the day: this is a Father's Day we were very unsure would ever happen again, whole, with all our children. I think of Beckett's Mama and Daddy, who celebrated their first Father's Day without him since he passed. I think of Angelo's Mama and Daddy who lost their 18-month-old on this Father's Day itself. We, all of us, must remember our gratitude.

Daddy opening his cards

Chris on Father's Day

Godparents

Over the course of the whole weekend, Thomas created a tremendous amount of art, the first day sitting for four hours straight with his cousin Cameron who is a university art major. They drew extensively on Saturday and Sunday, too.

Clutching his art kit along the 4-hour drive to Atlanta

Art with Cameron

Thomas (5) drawing Mr. Rogers

Thomas (5) drawing a Mustang car

Thomas (5) drawing Peter Pan

Thomas (5) drawing Kermit the Frog

One evening, Thomas's sibling asked him, "Do you like Cameron?"

He answered, "Yes, I love her." After a pause, "Are we related?"

"Yes."

"Well, Cameron and I are more related because we are both artists."

Miscellaneous

John (14) hosted his first Rubik's Cube Camp open to neighborhood kids and he hopes to host another one. He is really, really good at solving these cubes and knows so much about the math involved.

Thomas (5) has been dressing up a lot this week, including Mr. Rogers, a cowboy, a pirate, a Star Wars guy (no, he has never seen the movie), a lion, a fierce soldier, and so many more . . . .

Mr. Rogers

Fierce soldier

I am making some progress finding new piano and violin teachers for the fall, which is a big endeavor.

Margaret (10) playing violin

Chris took Mary (12) on a fancy daddy-daughter dinner date . . . I really cannot remember the last time she went out alone with either parent, probably not in a year.

Not to be outdone, Chris and I even got really bold and went out alone for the first time definitely in a year: We were gone for 45 minutes picking up medications for Thomas at the pharmacy! Ha ha! One must take a baby step, and Thomas wasn't too happy that we left him with a sitter, but he survived.

I took the kids to Football Friday this week. Thomas was so cute in his excitement, laying out his outfit the night before as well as his "clapper" . . . "so I can clap for the football players, since I am too young to play!"

Medical Updates

Finding Our Tribe

I joined two Facebook groups for adults with gastrectomies which is such a vast majority of the patients that children with gastrectomies is negligible. While we have been told by our team that total gastrectomy in adults (which is almost always done for stomach cancer) is different than in children, our team also hasn't treated any pediatric gastrectomy patients because they are so rare. I'm hanging around in these adult Facebook groups and learning so much from their experiences and descriptions, describing feelings and sensations that Thomas cannot put into words because he is five years old. I really can hardly describe the light feeling of hope in my heart to have found a "tribe."

Also, I did find one mother of a little boy, six years old, who had an emergency total gastrectomy two years ago! I have been searching for a pediatric patient for months! Of course, Thomas has two other organs missing that add to his digestive complexity (gallbladder and spleen), so we have to take that into account also. (You might rightly ask why the removal of the spleen affects digestion at all: because he has to remain on continuous antibiotics for now, his gut biome cannot be repaired, which is a very important step in stabilization after gastrectomy.)

Tapers

Thomas discontinued a hypertension medication he has been on since last fall, about nine months! I do a happy dance (on the interior, of course, we're talking about me) every time he gets to reduce or discontinue a medication. He is tapering off two more medications currently. All those adjustments does mean he had to increase what will end up being his sole hypertension medication. The thought is that his kidneys need more time to heal from complete failure and two months of continuous dialysis before they stop releasing the enzyme renin, which raises blood pressure.

New Tube Food

This week, we also switched his formula from Pediasure to Compleat, which is simply blenderized chicken and a half dozen vegetables and fruits plus olive oil. Immediately, he had a cessation of his terrible GI systems for three and a half days straight. It's not like this will be the magic fix of everything, but we really have high hopes that he is going to be much more stable, gastrointestinally speaking, on this food. I can't even call it a "formula" because it's just blenderized food conveniently sold in packets for tube feeding.

From very early on, I kept asking the team why I had to have such a strict diet for Thomas when eating by mouth, but overnight we were giving him a concoction of corn maltodextrin, sugar, whey, and vegetable oil straight into his tube. This Mama who was confused and irked is now hopeful!

Anyway, we are really excited about what the next weeks will show on this new tube food.