Waverly had another VFSS (swallow study) completed on Wednesday morning. We went to Fairfax Inova this time, instead of Children's. The fact that we didn't have to battle morning rush hour traffic or the terrible parking garage at CNMC were huge incentives to the location change. As many of you know, kids somehow do so much better/look healthier when you are actually sitting in the doctor's office. I don't know how she did it, but she didn't do a few of the behaviors we have seen her do at home that caused so much concern. They didn't see any evidence of aspiration, which was great news. She is allowing liquid to fall down her throat, before she actually swallows. And the safe guards we all have in place to prevent aspiration are weakened. Her oral habits are confused. She not longer has the ability to control the use of her tongue in a coordinated manner. The one piece of solid food she was given (a barium covered Cheerio) was swallowed immediately - no chewing.
The recommended we continue the pureed diet, avoiding all foods that require chewing. We do not have to thicken her liquids, since she didn't show any improvement with a thickener added.
I spoke with her SLP, who has been amazing. She has many helpful suggestions for helping Waverly continue to eat/drink orally. She is also going to recommend a dietician for Waverly. She has lost 5 pounds in the last 6 weeks, so we need to bulk up her calorie intake safely.
Thankfully, these are all things we can manage. As we enter into cold/flu season, the fear of illness is strong. We want to keep her eating safely and avoid aspiration, which can lead to pneumonia.