Monday marked the end of the “assessment” phase and the beginning of the “treatment” phase. This means that rather than simply recording Robbie’s reactions to a spoonful of food at his lips, he was then required to swallow fives bites within a 30-minute time frame. If he spit it out, they put it back in his mouth. If he bat it away, they held his hands down. Because of the severity of his initial reaction they had to bring in an extra set of hands to stand behind him and hold his arms. If it sounds intense, it’s because it is. During the first attempt (breakfast) I had to leave the observation room. I have watched Robbie endure blood draws, catheters, lumbar punctures, and major surgery. I can remain cool as a cucumber for the entire procedure and never show any emotion until I am alone and it is not until then that I will let the fear/worry/sadness bubble over and hold me hostage for a few moments. But this, I could not watch this. I had to look away. It felt like torture. There is such a psychological fear compounded with his physical inability that it was far too much for me to handle.
Lunch was similarly difficult, but not as severe. Dinner, better yet. Between Monday and today we have gone from having to have 2 people hold him, to 1, to zero. We have gone from vomiting, to gagging, to expelling, to swallowing with ease (not necessarily enthusiasm, but ease). We have gone from 5 bites to 10 bites. In FIVE days. It might not seem like much to the average person who watches their kid enthusiastically suck down a tube of yogurt, but for us, this is extraordinary. Beyond what I would have expected so soon. He might even like the taste of chocolate pudding, but I’m not willing to go that far just yet. Encouraging, to say the least.
Naturally I have to include a few of my favorite Robbieisms from this week. I can’t wait until he turns 14 and realizes he’s actually smarter than me (that’s sarcasm. It haunts me every day).
While moving a toy train up in the air, one of the playroom therapists asked if his train was flying. Naturally, Robbie then informed them that no, it wasn’t flying, it was “on an incline.” Obvi.
During an observed activity time, Robbie had to match an object with a corresponding card that had the picture of the object on it. The last card was a dinosaur. “Alright, Robbie, what’s next?” Moving the dinosaur on top of the matching card he says, “Oh, that’s a triceratops!”
Dressed up like Captain America for superhero day someone asked if he was
going to fight the bad guys. “No! I fight villains!” he replied. And after a few people called out to him saying, “Hey Captain America, is that you?” he yelled back, “Guys, guys, no. It’s me, Robbie. This is a c o s t u m e.”
Next week we have a “steering meeting” with the whole team (all 15 of them). We will discuss what they think are reasonable expectations for the coming weeks. It will be interesting to see what everyone has to say. Obviously, I say he’s a quick-learner and basically a genius so I just know he is going to slay at this whole eating thing. Not even kidding a little bit (I think you know that).
My mantra for this week has been, “THANK YOU LORD FOR THIS PLACE. Thank you, thank you, thank you. #thankyou.”