I have lots of wonderful things to report regarding our dear Robbie’s progress this week. I preface this in order to encourage you to not lose hope after reading the first half of this post.
A lot of people can agree that when you decide to diet, the first week is the easiest. You have energy, hope, and exciting thoughts of the eagerly anticipated, “new you”. The second week is more difficult, but perhaps you are feeling or even seeing a difference and so, with gumption, you persevere. Then, there’s the third week. You wake up on the 15th day and realize, you’d much prefer a large piece of cake to your morning oatmeal. Lounging on the couch in lieu of a run is more appealing than being gifted a new car. You suddenly see the road ahead, and you might as well be staring into the vast desert with no beginning, and no end.
At least that’s how it is for me (but I really like cake).
That is how this week has been.
Monday we had our steering meeting. With all of his caregivers seated around a large table we discussed every facet of Robbie’s life. We began with his lengthy and grueling medical history. His diagnosis of “failure to thrive” which led to the eventuality of the feeding tube. His hospital admissions for infection, dehydration and the like. His small stature, his struggle to keep on the weight, his underlying medical conditions that by way of definition, will only become increasingly worse. It is a difficult thing to sit and hear a grocery list of all of the things that are going to affect your child’s quality of life. For the most part, when Rob and I look at that little, blue-eyed boy, we see just that, a little, blue-eyed boy. A bright, curious, quick-witted little guy who, in Rob’s words, is destined to get by in life “on a wink and a smile.” To look at a clinical picture of him, it stirs memories of a small, listless baby who couldn’t look up at me to tell me it was going to be okay. That’s a place I’d prefer to avoid; I do not like to go to that place.
This is not to say that his physical struggles will not serve him in this life. This is his body, it was given to him with all of the knowledge of the challenges it would impart. Since he was small enough to hold in one arm, he has given us glimpses into his soul. Who he would become, and who he already is. That is he aware of his purpose on this earth, I have no doubt.
And with all of that said, I reiterate plainly, it has been a difficult week. For lots of reasons. I miss Andy. He is sweet and easy to please. He seems to adapt to whomever is watching him and makes the most of it. A comforting blessing.
Something else I struggle with is that my day is spent in the hallways of the hospital. I spend my time with the sick, the healing, their loved ones, and their caregivers. Which, in all honesty is wearying. If I were here in a nursing capacity, I might feel as though I had more control over the situation, or could at least steel myself against the emotions that fill the large hallways. As it is, I am raw, and subject to the influence of the uncertainty and fear of those around me.
But alas, that’s sufficient melancholy for a month’s worth of writing.
Onto a more deliciously, palatable update (and all of its cleverly implied double-meaning).
Robbie began to drink this week. He is required to drink Pediasure (what he currently gets through his tube) with all of his meals. It was a rough start but he is now taking 3.5 oz at every meal. As for food he is taking another 3oz. All of the food is still puréed to a smooth texture with the exception of an attempt at applesauce, which went surprisingly well. With this volume of calories they felt confident enough to cut one of four of his tube feeds he gets throughout the day. Unexpected and exciting! When they tried to remove a few of the “contingencies” (positive reinforcement, following his mouth with the spoon) he reverted back to refusing both the pediasure as well as the food. Though this was discouraging, especially after they had just dropped a tube feed, they seem to think that if they add back a few of the original contingencies, they can get him back to where he was.
The team anticipates he will be discharged with 16 different foods. They do not anticipate they will be normal-textured. Most likely a wet-ground texture (think oatmeal). During his separate (from mealtime) occupational and speech therapy sessions he vomits almost every time when they work with him on swallowing graham cracker crumbs. He has a very weak jaw, a hypersensitive gag and will need a lot of exposure and strengthening.
And so my thoughts this week are thus: this is not a dainty jaunt. This is a long and arduous trek. A trek that takes the path a roller coaster might. And so we press on, with faith. Faith in God. Faith in prayer. Faith in medicine. Faith in the warriors who look on from Heaven and pray mightily. And in my meager attempt to put words to paper I falter, but overall, faith in Robert Isaiah. This is his trial. This is what is required of him, and we can not take that away. And as Rob reminds me, we shouldn’t want to, because this is what will forge him into who he’s meant to be.