People have been wondering how Hollis is doing, and really he is doing as well as could be expected. But, he is so hungry. We have dropped the amount of steroids he is on by half of what it was when we came home from the hospital. The steroids have several side effects, and uncontrollable hunger is one of them. Also, we are trying to really clean up his diet by cutting carbs and sugars and adding better, whole foods. In addition to the steroids and clean diet, Hollis can’t eat or drink until after radiation during the weekdays, usually around 10 am. They have to put him under anesthesia so he stays perfectly still and this doesn’t allow him to eat or drink past midnight the night before. So, these 3 things have made a trifecta of Hollis having a one track mind most days- food obsession. He’s even taken to trolling pinterest for healthy, low carb foods!
However, as we have started weaning the steroids, his personality has gradually returned. In the last few days he started drawing again like he used to do for hours at a time! Attached is an example of his recent drawing which includes the usual dragons and robots, but now his drawings also include food and subliminal reminders to me that he is hungry. Just in case I don’t hear him every few minutes verbally reminding me, he will tape notes like this around the house.
Tonight we went to Rhett’s baseball game and Hollis decided to go play with his friends in the grass. He didn’t try to climb the trees like his old monkey self, but at least he was active, moving and laughing. It was good to see his smile and friendly personality once again engaging everyone around us. Before heading off to the game, we had a meeting with the Make A Wish team to make plans for a summer trip. It seemed surreal to be meeting with them as honestly, I don’t want to be a Make A Wish family. Who does? As it indicates something no parent wants to think about. But, seeing his smile tonight at the game reminded of how many days we have left to make him smile and enjoy his exuberant personality. So, we are looking forward to the possibility of a fun summer trip before heading down paths unknown…