Ezra and I are making our way through another week away from home. We are mostly doing fine, suffering only a bit of boredom.
Ezra’s especially immunocompromised state means indoor play spaces aren’t a great idea right now, neither is being around too many other children. This means we are very limited as to what we can do during the week.
Ezra has also had some muscle weakness and other discomforts caused by his most recent week of steroids. This means adventuring on wet and icy walking paths is a tad too nerve wracking for me – and not high on his list of things he wants to do.
We have spent a bit of time in the backyard at the place we are staying. What a blessing to have this space. We have also wandered over to a couple of different parks. But, most of the time Ezra and I can be found doing some homeschool work, crafting, playing games, playing video games and watching TV.
While Ezra dominates the TV during the day, once he’s sleeping Cody and I have been watching older episodes of The Amazing Race separately, but together.
Because the steroids also affect Ezra’s mood, he has also become less tolerant of me doing something that isn’t about him. That means if he happens to wake before I have joined him to go to bed, he is immediately annoyed that I am not laying down beside him.
The other day, when we were leaving the hospital, Ezra asked me why I have to watch so much of “the best rice.” Confused, I asked him to explain what he meant. I eventually figured out he meant “The Amazing Race,” and have since renamed the show The Best Rice.
Ezra’s renaming of the show is very on brand for him right now. He is very fixated on food (another steroid quirk), being satisfied after a meal for no more than an hour. He’s eating fairy normal things this time – no crazy need for Wendy’s cheeseburgers or shrimp chips, but still eating lots.
It’s a bit crazy to think that three months ago he had an NG tube inserted because he wasn’t eating. Now the complete opposite is true.
This week we have blood work on Friday to determine if we can move onto the second half of this cycle on Monday. Despite being very careful about exposure to cold and flu bugs, Ezra does currently have a very minor cough. Prayers that it would clear up quickly, on its own, are appreciated.
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