Several months ago David and I realized that Juliana's hearing was muffled. She didn't look when we called her name and she wasn't crying when the dog barked loudly. Shortly after this realization we learned that she had Kabuki syndrome and that hearing loss could happen in kids with Kabuki. We added an ENT doctor and audiologist to our long list of specialists.
Today was our third visit with the ENT. He's been keeping an eye on Juliana's ears and they have shown some improvement overall (thanks to GAPS, of course). These days we know that Juliana is hearing - she looks when we call her and she's also shown us that her speech is beginning to develop. Today we discovered that her right ear is looking much better but her left ear is looking worse. At this point it seems like we have given things enough time to improve and that intervention is appropriate. She will be getting tubes sometime in the next month.
I also asked the ENT to look at Juliana's mouth; specifically I wanted him to check out where her upper lip meets her gums. Nichole recently discovered her daughter's lip tie and it seems to be common among several GAPS kids. Of course I immediately checked Juliana's mouth and it seemed like she had one, too. Today's visit gave confirmation that Juliana does indeed have a lip tie. It will also be fixed at the same time she gets the tubes.
Here's the part that hurts: I've seen over a dozen people for Juliana's feeding issues. I've seen multiple doctors, I've seen lactation consultants, I've talked to LLL leaders. I've seen alternative practitioners that seem to be one step away from being voodoo doctors. I've seen three therapists that specialize in oral motor therapy. I knew to bring up tongue tie with several of these people but I've pretty much been blown off because Juliana doesn't have an obvious tongue tie. But not a single one of them has ever mentioned lip tie. It didn't cause her GI problems although it can do just that in some babies. But I will always wonder how it impacted her inability to nurse. She tried so hard but she just couldn't. It was hard to know at the time if the inability was due to tachypnea (maybe initially) or to low tone (her hypotonia is mild) or to GI pain (maybe).
I would like to end this post on a happy note, but there is none when it comes to this walk down memory lane. I am astounded that we could see so many 'experts' and yet never once have we had this very simple problem identified. It adds to the feeling that I am playing a mad game of catch-up; learning all the things that I need to know to help Juliana but sometimes not learning them until it's too late.