Owen had his oral/motor feeding evaluation today at Holly Ridge, the EI center that he is enrolled in. He did FABULOUS! He was calm and happy - even during and after D., the speech therapist, used a rubber toothbrush in his mouth while she held him still (to gage his oral sensitivity). He has recently LOVED to have his teeth brushed so the fact that he did so well was not much of a surprise to me. I thought perhaps that he might feel a bit cheated since the toothbrush did not have the yummy, Weleda kids mint toothpaste on it, but if he did, he certainly didn't make a fuss about it. I did feel there was a good chance he would become unhappy when placed in their "feeder" chair, in a room that was foreign to him with sounds of very active toddlers emanating from the hallway. But he was a champ and smiled a couple of times at us before we even got started on the feeding part...
Just like at home, he opened up like a little bird each time I showed him the spoon and tapped him on his lower lip with it while saying "open" and "more." He happily took several spoons of applesauce (with butter) and marinara sauce (with lots of garlic and olive oil, of course). And as he typically does, he even smiled a couple of times after the marinara sauce. That's our boy. Yes, O loves food and the more garlic, the better. D. did note a "weak swallow," something that we assumed was the case given his CP and low trunk tone. Fortunately, according to D., this ability can be improved upon over time with practice. She was not worried about it too much because he swallowed several times with each "bite," swallowing all of his food, slowly, and not spitting any of it out. He is indeed very thorough and careful (and tidy) when he eats. D. said he did excellent - much better that she anticipated he would given how long it has been since he's taken the majority of his food orally - and that she was surprised at how much he enjoyed the food and how calm he was during the evaluation. She was very happy that there was no feeding aversion and no choking, coughing or noticeable aspiration.
Since aspiration can be "silent," before moving on to substantial oral feedings, and per the neurologist's request (he will not "approve" oral feedings or release oral feeding recipes that adhere to the ketogenic diet until we move forward with the next step), we will have a swallow study done at Children's Hospital in the Spring. D. explained the process to me today - they mix barium into a couple of his favorites foods that we prepare and bring for the study. O will sit in a feeder chair, like the one he used today, and I will feed him enough food for them to obtain images of the efficacy of his swallowing, but more importantly, images that will also tell them if any of the food is being aspirated into his lungs. The trick with kids like Owen is that they have trouble coordinating the closing of their airway with the opening of their esophagus when they swallow food. Any food that is taken into the lungs has the potential to cause serious infection. In talking with one of the experts on this at Children's a few weeks ago, a wonderful occupational therapist who has seen Owen twice and who is well known across the country for the work she does, it seems that Owen is not a very high-risk kiddo for this type of complication. Even if he does aspirate a bit of food, R. reminded me that we we ALL do this on occasion and since O has shown that he is very healthy, is not prone to infections, including respiratory infections, the risk relating to minor aspiration, (if he is aspirating at all), is greatly reduced.
Since I am pregnant and the swallow study involves a series of x-rays, we will wait until after February to perform this next test. Until now, we have been given the thumbs up to continue exploring tastes and helping O to improve upon his swallowing abilities.
After a LONG week of MANY appointments, this totally made my day.