We saw an ENT this morning, adding yet another specialist to our list. I was pretty clueless as to why we were going, other than our Mito specialist wanted us to get another opinion on Grayson’s hearing and lack of any speech. We left Katy at 6:45 for our 8:00 appointment. I was having panic attacks the whole way because 1. I needed to go to the bathroom badly and kept envisioning scenarios where that didn’t end well and 2. I never seem to learn that leaving an hour and 15 minutes before an appointment in Houston rush hour is not enough time. But we made it, found a bathroom, and all was well. And honestly, I’ve just got to get over the whole rush hour traffic thing, because G’s school is in the same area and I’ll be schlepping down there 3 times/week starting in August.
The Hearing Impaired teacher for ECI met us at the appointment, which was great, and I so appreciate her making that drive and for her extra set of hands. We are trying to qualify G for her services, and she knew the right questions to ask the doctor to make that happen.
First we met with the audiologist at the practice and she did another hearing test in the booth, which G has never done well in. Today, he responded to voice on his right side, but no other sounds on his right or left. The left ear is the one he has hearing loss, so his reaction fit.
The doctor saw us after that, and was great. Physically, Grayson’s ears look great- no fluid or physical problems. I am so grateful that we haven’t had to deal with ear infections on top of everything else. We are going to do a hearing aid trial on the left ear for three months to see if it makes any difference in language and speech development. The doctor made it clear that he doesn’t think it’s going to work. He agrees with our neurologist and the other audiologist we saw that Grayson’s lack of speech is probably totally neurological and not hearing-based. He explained that kids who are totally deaf in one ear can still develop normal speech, so someone like Grayson with just some loss in one ear should be talking just fine if that was the only issue. BUT he doesn’t want to miss out on the chance that a hearing aid could help…so here we go. We go back in a week to get it.
The ENT also wants to repeat the ABR in three months, but I explained I didn’t want to sedate him unless absolutely necessary, and he totally understood. So in August, we are going to try to do an ABR in his office while Grayson is sleeping. It may or may not work, but it’s worth a shot to do it drug-free.
Grayson took a nap on the way home and that was IT for the day. Good grief, it’s been a long day. We tried to take a walk, but it’s already a billion degrees outside and I’m worried about Grayson in the heat. What in the world are we going to do this summer?!?
Because I complain when we have nothing to do, I won’t complain about our schedule the next two week. But yikes, we are going to be busy. Thankfully, a lot of it is fun stuff (pool party for G’s school, baby shower, support group dinner). This Wednesday is Grayson’s sleep study at the hospital, Tuesday we get the hearing aid, and next Thursday, he is having his MRI, spinal tap, EKG and Echo cardiogram, all under one sedation- hooray! Of course, I am terrified to see the results, but also relieved we were able to get all the tests scheduled so quickly.
So that’s what’s new in the World According to Grayson (is there any other world? sheesh). What’s new with you?