ENT

Today we went to the ENT (Ear, Nose and Throat). There is not an issue currently, but it's one of the doctors with whom we need to make contact for the future. We received positive and negative news.

First of all, the mid-facial hypoplasia (the underdevelopment in the eye area that gives children that "Down's look") is not that severe. We knew that, it's one of the things that made it difficult to identify Justin. But that is actually good news for any potential sinus issues. That "pressed-in" look makes for narrow sinus passages that get infected easily, and then turn to more serious issues quickly. So, in noting that, it means that Justin may not have those problems. Yeah! We just have to pray that that part of his face continues to grow and keep pace with the rest of his face.

Second of all, Justin's ear canals are VERY narrow. Even small for Down's children. She couldn't even see his ear drums with the very smallest tip. This means several things: If he gets an ear infection, we probably won't be able to tell visually. If he has a fever and he is pulling at his ears, we will just have to assume it's an ear infection. That means he will probably have to have his tonsils and adenoids removed at some point. And they cannot put tubes in his ears because they cannot SEE his ear drums to do it. This also means that he will probably have some sort of hearing loss. This is just because the canals are small. Down's tends to cause hearing loss from fluid build up, but we cannot even see if there is fluid, to know that it's a problem. The fluid build up causes damage, which then causes hearing loss. This is the way it works as best as I can tell.


So, this means that we have an appointment with an audiologist to check to see what he can hear now. Justin has not had a successful hearing test yet, so we expect that this will show some sort of problem, and we will have to return an a few months to try again, but we need to establish a baseline to see what changes.

I was thinking as I left the doctor that I was very grateful to have the appointments mapped out so I know what to look for and what to expect. I know that with the diagnosis for Down's that there are things that are issues. Other parents with something that gets diagnosed late, or maybe even never are just left wondering. They don't know when to make the call when they see something that doesn't seem right. I feel odd saying that I have an advantage, but in some ways I feel that way. I have an incredible team on my side and it makes me feel hopeful.