May: That's a Wrap!

 

Perhaps the highlight of my week was during Mass: I was holding my sleeping three-year-old when my eight-year-old squished up to my right side to snuggle. Then my five-year-old climbed across the pew and squished into me on my left side. I was in a big pile of these sons in the middle of Mass, enjoying so much these little ones who still think the whole world of me--a consolation of parenthood that does not last forever.

Homeschool

Our eighth grader finished his year at Regina Caeli Academy (hybrid homeschool), and this week was wrapping up the online Latin and Logic classes he had started because we originally intended the homeschool year to be at home. He has worked so hard and achieved much! 

We've re-incorporated individual holy reading before breakfast and doing "Morning Basket Time" most mornings after breakfast.

The eight-year-old and Mama doing early morning holy reading together

Morning Basket Time

We're still knocking out about a puzzle a week and thoroughly enjoying it.

Three-dimensional globe puzzle

Thomas made an aquarium out of a shipping box.

The 10-year-old wants sewing lessons from Mama.

Enjoying the Outdoors

Family walks, Mama's exercise walks, and now swimming in our pool, which we've opened for the season!

Socializing

It is a joy and a refreshment to the soul to see friends again! On Saturday, we hosted friends for a meal. We got to visit with numerous pals after Mass last Sunday, then go to lunch with some dear friends. Tuesday and Thursday took the oldest two kids to rehearsals for Les Mis (mature plot content excised). Wednesday night meant a celebration of the last meeting of Fidelis for the year: families gathering for old-fashioned, outdoor lawn games and roasting s'mores over the fire. On Friday morning, we joined families at a friend's house to play flag football. What a contrast to nearly a year of being on total lockdown due to Thomas's condition.

Medical Updates

Thomas graduated from Occupational Therapy! He has met the numerous goals established at the beginning of care. We had such fun with our OT, but her job is to graduate kids from working with her. Thomas will continue at home to strengthen his upper body. Meanwhile, he will continue to have Physical Therapy for a long time to come.

Thomas had a follow-up visit with his surgeon this week. It is beyond the time when his surgeon believes that Thomas's vomiting (about 20 times weekly) should have resolved naturally, him being six months post-gastrectomy. The vomiting and limitations of his J tube make it impossible for Thomas currently to get enough calories to maintain his weight or grow. His doctor thinks deeply about all the possible causes and laid them out for us, so we are proceeding at some point soon with an imaging study of his intestines. We know from the CT scan two weeks ago that they are sometimes running retrograde, meaning that liquid injected in the jejunum is flowing up into the esophagus, plus past the esophagus to his liver: NOT GOOD. Some possible repairs are barely invasive, but some are surgical, so there are big questions ahead. We had hoped Thomas's surgical journey was all done, so to contemplate the possibility of more is difficult.

Additionally, Thomas had a rough week with GI symptoms, and we still don't know quite what "set off" his system, although we have hypotheses. These mysteries will probably be something we have to become accustomed to over his lifetime, but our job is to try to figure them out. I keep copious notes and I was in communications daily this week with both Thomas's GI and surgeon. Thomas had such difficulty this week that he lost two full pounds (a lot in a five-year-old) before we tweaked some things and seemed to get his GI symptoms to calm down. As of writing this tonight, I'm only just starting to have confidence that Thomas may be stabilizing, as I had started to wonder how long and bad Thomas would have to experience symptoms before they would want him inpatient to stabilize him themselves. Even having to contemplate that possibility is new, strange, and foreign to us . . . but it's well-known territory to parents of kids with all manner of special needs who might be reading this and saying to me, Welcome to the club, friend, welcome to the club.

As Christians who know not the day or the hour for any of us, we embrace the present by planning some wonderful family experiences and trips this summer. We practice prudence, we put in a lot of time, money, and effort into providing the best medical care for Thomas's new situation, but we also look at things like taking him upcoming to Tweetsie Railroad to provide joy and create family memories and we know those things are really important, too.