EEG went well. We had a really good tech who was super fast at getting her all hooked up. He asked if I was okay with the
The swallow study went fairly well and was definitely informative. They were running behind, which for a girl who was starving was not cool. As it turns out, M has a 5/30 projection fraction. Basically for approximately every 30 times she swallows, 5 times the food or liquid slips under her epiglottis and into her trachea. Each time it occurred during the study, she was able to recover without aspirating, however, this does place her at higher risk for future aspirations. It also seems that it takes her on average three swallows to empty her mouth and throat instead of just one. We will be exploring thickening her liquids and medications and will be feeding her slower and in very small bites. It is possible that during her last shunt surgery in January (since after that is when this all began) some nerve damage occurred to her vocal chords or throat. We'll be talking to her ENT about this at her upcoming appointment in a couple of weeks. It's also possible that her reflux medication dosage needs to be increased since it hasn't been adjusted in over a year.
E's pediatrician appointment was extremely informative and he did such an incredible job! For a sensory kiddo, visits to the doctor are always incredibly challenging. He did awesome - he wore the gown, let her look in his ears, eyes, do his blood pressure and his exam with very little fight. He got 4 shots and was quite forgiving. The nurse brought him a sucker and he said "I don't really like candy, do you have anything else for me?" Overall, the doc was extremely impressed with his language skills, his intellectual ability, etc., but not so much with his growth. I was expecting that. He's gained two pounds in the last two years. In fact, he's been hovering between 29-32 pounds for OVER two years! He is at 41% for height and 3% for weight. She is now concerned so he had some blood drawn to begin exploring the possibility of other underlying conditions. He eats a good amount of food and excellent quality - whole milk, full fat yogurt every day, fruits and veggies, pasta. That said, he never stops moving, either. He is in constant motion! She immediately noticed his "special" twitches and "ticks" as well as his sensory issues and discussed patching him in to the developmental clinic and following up with neuropsych. Off the doctor subject, but on the developmental subject, we have finally won the battle with school over getting him therapy services. His IEP is being written and he'll be receiving SLP and OT beginning soon!
So, it's been a busy week, but it feels good to have answers and plans!