Josh's tinnitus and residual hearing. Vestibular problems.

Wow. Interesting title, eh? I have a good stat counter, so I can kind of see who's "visiting" this blog. PLEASE leave comments, suggestions, ideas you may have to share. That said, back to Josh.

Big, no, HUGE ah-ha moments for me tonight. One now, just past 2 in the a.m., that is such a big click in my noggin, I have to get it out on paper so I don't forget about it.

Yesterday Josh's teacher and other staff said he did GREAT in school. But he hit a brick wall, was very tired and crashed in the truck on the way home. But I didn't take him home, went to a friend's house w/even more kids around. Woke him up from his deep slumber to a small group of chaotic kids. He was burned out. Didn't melt down, but wasn't interested in hanging out and kind of stuck to himself. Normally that wouldn't bother me, I know he's fried after a full day at prefers to be on his own. So I really kept my eye on him when we finally did get home.

He started to communicate much better after he had a chance to unwind at home. It was nice to see him perk up, even though he was exhausted after a long day. Then after I took off his CI, before bath time, he pointed to his ear to signal he heard something. Oh, interesting... Then he started to make his high pitched sound, I'd call it an "almost yodel." Only way I can describe it. So I made the sound, loud like him, and he stopped and said he HEARD ME. He was not looking at me, he did not have his CI on. I tried this a bunch of times with him, high pitch and low, and he responded. Not to different words that I tried, but to the sounds themselves. Could it be from "feeling" the sound? He responded when he was across the room from me, too. I had to cup my hands around my mouth, almost like I was trying to make the sound louder (as when yelling to someone far away), but he turned around and signed he heard me. Wow. First lightbulb moment, he does have a bit of residual hearing. Maybe he makes the loud sounds sometimes because he can actually hear them a little?

Then, lying awake at 2 in the morning, not unusual for me, I thought about this. It finally dawned on me that I was so caught up in the thought that he may have some residual hearing that I completely forgot he had pointed to his ear FIRST, then started making his sound, then responded to my sounds.

Flashback: Matthew is not quite three years old, going through a horrible time of vestibular problems, residual hearing dropping with each "off balance spell", hearing aids not helping him anymore, didn't yet have a CI. He would tell me, w/o his hearing aids on, that he could hear things he previously heard w/ his HAs. Tinnitus. Clearly tinnitus in my book. He would describe it as helicopters (we lived on a Navy base w/active air traffic), a train, dogs barking, telephone ringing, baby crying, all things he had related to w/ his hearing aids. Post implantation, when he was hearing sounds with his CI, he was really freaked out at first. Almost to the point of scared that the sound was like before, when he had his horrible bouts of tinnitus. As soon as he could put something REAL with a sound, like a truck down the street, geese honking across the street, an actual helicopter overhead, he was THRILLED!!!!! Matt was 39 months when implanted, almost the same exact age Josh is now.

Back to Josh. He has been very excited lately to point out when the microwave beeps, or the dryer, or anything else making a beeping sound. He'll point to his ear, and go look for the beeps. When he hears the beeps, he knows his warm, chocolate milk is done, or it's time to take the laundry out. The kid is obsessed with the laundry. That's a good thing, but I doubt it will last, darn. Anyway, when he pointed to his ear last night, AFTER his CI was off, I'm just wondering if he was telling me he was hearing something like tinnitus. Then responding with his own sounds. I'm not sure what this all means, but it really has me thinking, my mommy wheels spinning.

What does this have to do with vestibular problems? The following are just observations, musings of mine. No diagnosis, nothing concrete here. He is all plugged up. I have noticed in the past that when he has a cold, his balance is more affected. Cold this lead to more problems with tinnitus? I am having bad problems with tinnitus right now. Not real bad, but noticeable. I'm also having a horrid time with allergies. AND I noticed Josh's eyes were a little red the last couple of days, too. In the way past, Matt's vestibular problems were their worst on days that were heavy with yellow pine dust. He literally lived on Benadryl for three months, which seemed to help tremendously. His doctor then told me that Benadryl is also a vestibular inhibitor. If Matt has one of his now rare off balance spells, Benadryl will literally stop it w/in 20 minutes. But Benadryl never affected Matt's activity level, it knocks Josh out. Should I try some Benadryl with Josh? Maybe a smaller than normal dose? Or Sudafed to see if that helps to unstop his sinuses, maybe relieve some pressure and thus help him out?

See, this is how my brain works, why I can't sleep some nights. Maybe I worry too much about my boys, but that's just how I am. When I figure out something that can help them, I get really excited about it. I have an appointment w/Josh's audie next week, I'll bring up the possible tinnitus and residual hearing with her. And I might need to think about getting Josh in to see someone about vestibular issues.

Back to those. Josh is progressing leaps and bounds with his balance and motor skills. He has reached a strong independent streak, won't let me help him into and out of the truck now. Wants to "walk the plank" at the park, you name it. And no coincidence, as these skills progress, so is his communication. Maybe not at the end of a long, brain frying day (my brain was done working yesterday, too), but he is doing much better at home and school. Willing to try new things with vocalizing that I wouldn't have even considered trying with him before. It's been very interesting to me to see how the physical and communication really go hand in hand. That's what leads me to believe that many of Josh's motor processing, expressive language and other delay issues may be related in some way to his vestibular problems.

He is progressing, at his own slower pace, but forward movement it is. On a much more positive note, now that he is expressing himself better, we're finding out how much he really has digested. His teacher will orally say, "It's story time. Go get the pillows (to sit on)," and he'll run to get the pillows. She said yesterday that he recognized may of his alphabet letters with a new puzzle she had, and he's just past his third birthday. That's pretty good in my book. When I introduce a new word to him orally, he's picking it up much more quickly now. Yesterday he was playing with the mop. I told him what it was, gave him the word. He instantly got it. Most hearing kids may learn huge portions of their language through osmosis, through hearing the spoken words all day. We may take for granted what they do and don't understand. Well, Josh knows all about the mop now. Maybe that will be his next obsession? Fine with me. Some kids might like cars, Josh likes to clean. Again, I wonder how long that will last...

Ooh! That brings me to the same point I keep bringing up. Read to the kids. Language, language, language, get it to them. I'm VERY tired most days, that's just life. But I've been making a much stronger effort to read to Josh and Chris most days when they're home. Chris could sit forever listening to books. Josh actually sits quite a long time, now, too.

Okay, that's enough for now. My head actually hurts, like a little, throbbing migraine. I sure hope I can catch some more sleep. Please, Mr. Sandman?????? I have a long couple of days ahead of me with the boys. PLEASE let me get some more sleep? I feel better getting all of this down in black and white. Maybe I won't stay awake thinking about it now, kind of exhausted the topic. Exhausted, yes, I am. Need sleep...