A typical day includes 3 meals (breakfast, lunch and dinner). In between each meal there is playtime where the kids can go to supervised playroom and get a lot of one-on-one attention. During playtime the children will have different therapy sessions. Robbie meets with a speech therapist (swallowing, gagging etc) as well as a occupational therapist (chewing, jaw strength, using utensils). And then there is a bit of down time where he and I wander the halls of John’s Hopkins while he sings the Spiderman theme song and pretends to run sideways along the wall.
Robbie is amongst 12 peers. He is one of the only “typically developing” children in the program. This presents an interesting scenario because he is surrounded with peers who do not react in ways that he is used to. For example, if he decides to take a toy from a peer, they might decide to throw a chair at him. Cause. Effect. These are valuable lessons for a young child.
Before I drone on and on about how he’s charmed the staff and been adorably clever, I’ll just cut to it right now and tell you that only a very small amount of purees were consumed at the beginning of the week and the rest of the “meals” have been met with everything from wracking sobs, to a polite, “no thanks.” This is to be expected and the team is not concerned. They say it is typically a slow start.
-On the first day Robbie walked into triage and announced, “I’m Robbie Annnerson, I come from Houston!” When he saw that his introduction was so well-received he added, “want me to show you on a map?!” The nurses were like butter in his very small hands.
-During a “toy preference assessment” they lined up a series of 8 toys to determine which toys he liked best and in what order. His first selection was the airplane. They allowed him to play for a moment and then took it away and told him to choose his next toy. He declined saying, “no, that’s okay, I’ll just take the airplane.” After a few rounds of them insisting and him declining, he finally gave in. He proceeded to pick up each toy, feign interest for a moment, and then set it down. He continued to do this with each toy until by the end he was hardly putting a finger on the toy before asking to have it removed. Reaching the last toy he put his hands in his pockets, let out an exasperated sigh and said, “now, can I have the airplane?”
-When the kids are moved from one playroom to the next, they all ride in a large “buggy” that sits 3 people across and 3 people deep. I happened to be walking past as they were preparing to load up. And who do I see but Robbie in the front waving a hand to the rest of the excitable group of kids shouting, “C’mon friends! To the buggy!” Like a fearless leader charging into battle, he rallies the troops until they all get in trouble for trying to rush the door.
As For Me?
I teared up no more than 4 times this week and only cried once. And that’s when I walked into the Dome and looked up at the giant Christus they have in the foyer. It was a long week and I was so moved I couldn’t keep the tears back. Of course God is present in this place. So many prayers, so many desperate pleas to our Maker to save and heal. So much sadness and so much hope. Confirming for me, once again, why being in the medical profession (particularly pediatrics) is one of the closest ways that mortals can come to being Christlike.
Let Me Sum Up
Did anything of great significance happen this week? No. Am I discouraged? Are you kidding? No. The kid has NEVER eaten anything so I’m not expecting a miracle (just yet). The program is impressive to say the least in its organization and attention to detail. We’re here and we’re ready to work. So onward and upward it is.