Swallow Study- Check!

Feeling much better after the appointment today. I have to back up and talk about Friday's appointment with the ENT. Because Henley has begun to lose weight, the neurosurgeon wanted to start ruling some things out that could be potential problems causing the weight loss. For most children losing a pound of two at age 5 (almost 6) might not be a big concern, but Henley is still just 34 lbs, so it remains a concern for her. So this is the reason for the influx of new appointments since her MRI in early Sept.  

Friday we saw the ENT because they wanted to look and make sure that her tonsils were not enlarged and causing her to have problems swallowing food. Obviously, if you are having trouble swallowing food, it would make sense that you would not want to eat as much and therefore lose weight because of it. Tonsils can be removed pretty easily if that is the source of our problem so we went to see what the ENT said. Her response was that Henley's tonsils looked perfectly normal and she did not believe that was any part of her problem. Good news there, we can cross possible tonsillectomy off the list.  

Today the therapist watched Henley eat a few different things and watched her struggle to eat chicken (which is what we see at the dinner table) She grimiched when she swallowed and so for parents we assume that means it's because it's hard for her to swallow. The reason for the swallow study is to figure out WHY is it hard to swallow? The result: she is simply trying to swallow her food without chewing completely. Most likely because of her muscle tone issues and not having a super strong jaw. So I jokingly said I guess we need chewing therapy next. At least we know now that everything is going in the right direction and not attempting to travel down her windpipe. Thanking the Lord for there not being swallowing issues. We can work with chewing issues!

Wednesday night is her sleep study. This will be the final test for a while for Henley, so we are praying that everything is normal and there is no central sleep apnea. This would certainly help me sleep better at night if we could rule this out too. 
 

Here is a photo from Henley's sleep study