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?
Oh Ugh! That is a lot of time at the dr. office- last year when we were having to see so many for Abby, I would wake up and wish I could just stay in our Pj's! 🙂 Hope you guys find a way to work around the heat, We thought moving north would help Abby avoid the heat, but the cold turned out to be just as terrible – As they get older it gets a little easier.. Sending lots of energy and hoping for easy Houston traffic to make all the appointment easier on you guys!
Wow! I am amazed at how fast your doctors move. Nothing seems to move that fast here. It is so freaking hot already! I don't know what I am going to do this summer either. Even with the AC on full blast today in the car instead of the van Matt was too hot he entire time. The van is a little better. I hope the hearing aid helps. Matt had an ABR at 6 months. We did it with him asleep. He was much younger than Grayson though. You might want to try giving him melatonin before it to help him sleep. That is what we did for Matt's last EEG we didn't want to sedate him for. Good luck with all the testing! Good luck with the sleep study. I am sure you are nervous since he likes his crib so much. I really hope it goes smoothly.
Wow, what an overwhelming couple of weeks, but I'm sure it's good to be getting some answers. You are such a dedicated, wonderful mommy. You and G are lucky to have each other. 🙂
Busy busy busy!I hate rush hour traffic too, but love getting the appointments out of the way early. Glad you're getting lots done so you can get to answers that much faster.
Glad to hear that the Dr. is proactive and really listened to you. It seems you are FINALLY seeing some great doctors who care and are listening to what you have to say. And you say it all so well, so proud of you for how you stand up for what you know G needs. Love the new blog layout and tabs, looks so great!!!
I just love that that teacher met you at the appointment to ask the right questions so that you can take advantage of her services for Grayson. WOW! That is dedication! It's one thing for us to be dedicated to our kids, but it's so special when we see other people being dedicated to them as well!All of those tests under one sedation sounds perfect. I don't blame you one bit for trying to limit the sedations.
Phew! Your schedule makes me tired! Glad you can get all that stuff done soon – will be nice to get it all complete. You live in Houston too? I hate the traffic in this city…
Wow, mama. I feel my stress level increasing just reading about your schedule. I'm impressed with you!