A Bustling, but Quiet Week

This week was incredibly busy for me for how little I seem to have to report.

Thomas dressing up on a random weekday "just because"

Athletic Accomplishments

Our eight-year-old Joseph learned how to swim this week! We are proud of our newest swimmer!

And in a more emotional milestone, Thomas began riding his two-wheeler bicycle again! He learned how to ride a two-wheeler at age three and was quite the proficient speedster before cancer. Once he was in chemotherapy treatment, his doctors did not allow him to ride his bike because of the risk of falling and bleeding uncontrollably. Then once he was in the hospital and lost the ability to talk, walk, move . . . well, after three and a half months home, he asked me this week, "Mama, could I just try to ride my bike?"

I quietly gulped, prepared myself for a bloody skinned knee and tears, and cheerfully reminded him that if he didn't have balance or strength, it was okay. After 13 long months, Thomas got onto his bike and simply rode off like he hadn't missed a day! He has been riding it daily since.

Wildlife this Week

Yet another hummingbird got disoriented in our garage and had to be rescued after becoming weighted down by a spider's web and too exhausted to fly. John was one happy fellow to have the enjoyment of simply holding this beautiful, tiny creature before setting it free.

Our neighborhood hawk took up its perch on my garden archway one day . . . 

Miscellaneous Moments

Painting wooden pencil boxes for the new school year

Enjoying lunch outdoors!

Nighttime snuggles with Mama

Thomas dressed up as an airplane pilot to visit friends.

Parental Milestones

This week Chris and I went on our first daytime date. Last week, we drove to the pharmacy together, leaving Thomas without us for the first time in a year. This week, we took the next bold step to eat lunch at a restaurant about two miles from our home. Then I also went outside my comfort zone by accepting a dinner invitation with four other ladies which caused me to miss Thomas's bedtime routine. He shed quite a few tears ahead of time and then was tearful while I was gone, but everyone tried really hard to cheer him up and distract him, and one more baby step of progress was made for both Mama and son.

Medical Updates

Thomas has steadily lost weight for the three and a half months since he was discharged home. After  the most recent two weeks of accelerating and mysterious weight loss, Thomas's weight at least stabilized for this one week. Stable is better than losing, even if the stable weight is lower than it should be. Thomas is eating very well and had an average intake by mouth of 1,234 calories daily! This is truly astonishing only three months after graduating off of TPN. With his tube feeds overnight, his caloric intake averaged 1,606 per day! 

We did some tests this week to check for various types of nutrition malabsorption and await the results. Another both/and consideration is that Thomas's calorie needs might be even higher than the 1,300-1,500 that his dietician estimated. Maybe if his weight finally stabilized at 1,606 cals/day, then he might gain if we could get his calories closer to 1,800 or 2,000. Time will tell!