Easter Octave Update

Deliberating How to Proceed

Something on my mind has been how often to write on my blog. I've kept a family blog for 14 years, but it wasn't getting traffic like the 1,500+ unique daily readers that CaringBridge began receiving! However, as I go back to my typical writing, it won't all be medical updates about just one of my children, so I don't plan to stay on CaringBridge in general. Perhaps I will put some very specific Thomas updates on CaringBridge, but keep my general writing on my blog. Also, I would finally like to fulfill my dream of paying for a webpage and upgrading the whole blog . . . I just need time to research how to do it and then implement it!

Part of me thinks it's my season to sink back into obscurity, but I have loved writing since I was five years old with a pencil in my hand and beginning to write stories.

Would anyone like to offer input on how I gracefully bridge over from CaringBridge (just Thomas-focused) to our family blog and to a revamped, improved website? I'm short on time and technical abilities!

Getting Outdoors

My duties are still keeping me mostly inside, but I am trying so hard to start getting us outdoors. My Big Dream that currently seems like an Impossible Dream is for me to take a daily, brisk walk for 45 minutes.

This week, I will be content with the very first outdoor walk Thomas got to go on in five months! Joseph walked behind us festively blowing bubbles and Thomas carried his nature notebook, asking me to stop at various spots so he could sketch an image. I'm not exaggerating about just how much artwork he does daily!

On Easter Tuesday, some girls gathered for a Girls' Hike at a local lake, so I ended up taking the boys on a Boys' Nature Walk on the handicapped accessible path at McDowell Park.

I was startled how well Thomas remembered all the restrictions he had been under while receiving chemotherapy (but I shouldn't have been surprised at his memory). This week, he has asked numerous times before taking action, Am I allowed to touch dirt? Am I allowed to pet that dog? Am I allowed to hold this lizard? It has been a joy to tell him that his immune system is currently strong, so his oncologist has given him the green light to do all these little boy activities.

Centipede

Lizard

Dead snake (not just skin)

Artwork

Thomas spends more than half of his time doing art projects or singing at our player piano. He announced to me that it was very important to him to have the whole family do an art project together, by which he meant the Our Journey Westward nature-and-art lessons online (highly recommended). "With everyone, Mama."

Frozen Yogurt Outing

Going out in public with Thomas in tow still takes planning and mental energy, but we're giving it a try!

Dear family friends gifted us a gift certificate to a local frozen yogurt place, which even had low-sugar yogurt, which is better for Thomas. We went on a family outing, even though it kept us out a bit past Thomas's bedtime!

Physical Therapy and Occupational Therapy

We currently have OT coming in once a week and PT coming in two to four times per week, depending on the therapist's availability. Thomas is getting strong every single day. His overall constitution is brightening: In the hospital, he was taking up to four naps daily and sleeping 12 hours overnight (which we were thinking was not only healing, but a sign of depression). Each day at home, he has been able to stay awake a little bit more, so that now at the two-week mark, he is taking one afternoon cat nap daily, and sleeping about 10 hours overnight: typical of many five-year-olds! This week, he has become independent with his wheelchair on the ground floor, pushing himself around wherever he needs to go (indicating much better arm strength)--sometimes exclaiming, "full speed ahead!" In one week, he has gone from being able to stand only with "max assist" (meaning the therapist is holding up dead weight of a sack of potatoes) to "moderate assist."

Personality Emerging

During Thomas's first week home, he was admittedly still very quiet, a flat affect on his face much of the time. This is a huge transition for both him and me in one direction, and I'm curious but unsure how big of a transition it is for everyone at home having us here.

Even on Easter Sunday, Thomas remained quiet and mostly unsmiling, with just a few moments of brightness.

But during this week, Thomas is emerging and doing so in a big way! He is laughing all the time, cracking jokes, talking, starting to be able to raise his voice louder (fully inflating those lungs!), and singing his heart out, especially comedic songs, such as those from the Beethoven's Wig CD. Chris and I are reminded that we have long considered Thomas our most cheerful child out of six, something we couldn't see during his hospital stay.

Medical Updates

Thomas graduated off of TPN, we hope forever! His labs taken Monday looked good, so on Tuesday he was switched to one week of planned IV fluids, with the goal next week of receiving nothing by IV.

Dropping TPN means losing 50% of his calorie goal. Now my daily task is to count all his calories right after dinner, then program the pump to give him the remainder of his calorie goal in J tube feeds overnight (PediaSure Peptide). His calorie goal is 1,300-1,500 per day, but staying closer to the low end during this period of time when he isn't as physically active. He is currently averaging 700 calories by mouth daily, more than half his goal! 

Mary (12) has proven a dedicated and voluntary right-hand assistant in this area. She helps push food constantly, she gets up and makes him whatever food he wants, and she carries around her own little notebook tracking his food, which I then combine with my notes at the end of the day.

Thomas eats in very tiny amounts, often like a half slice of salami, and half a cracker, and one teaspoon of peanut butter. Yet, everything must be accounted for! You can imagine with serving sizes like that just how often we offer and encourage food and how readily we must obtain food for him when he is able to eat again. It is a constant. 

The GI team will continue to check his labs often (weekly for now) to make sure various nutrients and electrolytes are not getting out of whack. Long-term data will also start to reveal if he is having any problems with malabsorption. Obviously, tracking his weight weekly is also an important data point.

Meanwhile, I am becoming more confident in the new medical duties in my life, despite still having some meltdowns with husband and friends, and shedding some tears. Each day I print out Thomas's planned medical care and check off the sheet more than hourly, living by alarms on my phone which are, for now, my monastery bells. I carry my list and my cell phone on my person at all times, also because I receive numerous phone calls from medical caregivers daily. You know that MyAtrium (hospital) web portal that I've had reason to use only a handful of times over the years? Doctors are now pinging emails back and forth with us with specific care decisions numerous times daily. I know that will slow down, but it's a lot right now.

We have at least one medical person in our home daily, plus one to two medical appointments per week for this whole month. On good nights, Chris and I are up with Thomas, his meds, his pumps, about four times; on the rough nights, it is hourly. Sometimes I break down and I'm yawning pretty much all the time, but with God's grace and a lot of effort I'm doing my duties better than I was last week.

Onward and upward!