Our first specialist on our list this month is the ENT. He's brand new to us, but well-known in the area because he's who everyone goes to for cochlear implants. He knows his stuff. Too bad those smarts don't come with a great bedside manner.
Just as most people are, this Dr. was a little surprised to see this tiny little guy sitting in his chair, then see a chart that says he's 7 years old.
So first I told him why we're there. Asher's tonsils are huge, he can't swallow anything more than applesauce consistency because they're so huge and he thrashes and gasps all night in his sleep so I'd be shocked if he didn't have obstructive sleep apnea. Also I want an ABR done at the time of surgery. I think his hearing is fine, but as long as he's going to be under anesthesia it's a good time to have the test done.
On with the exam.....
The doctor looks in Asher's mouth and says, "Yep, those need to come out as soon as possible and we'll do adenoids too. And, just so you know, although his ears look clear now, if I find fluid in his ears at the time of surgery I'd like to put tubes in. And do you want his tongue reduced at the same time?"
"His tongue? No."
Tongue reduction surgery was a hot topic several years ago when people were doing cosmetic surgery on their kids with Down syndrome to eliminate the facial features that identify our kids as "different". It's highly controversial and....well no...I don't want that done.
"Ok but wait. Tell me why you would want to reduce his tongue."
Asher has Macroglossia from years of sucking on his tongue when it was his only form of stimulation. His baby teeth sit at a funny angle, at the very front of his gums (so you actually see MUCh more off the tooth root that you normally would.) This is from his tongue constantly laying over his teeth, pushing them forward. Since coming home he's had three adult teeth start to erupt, and they're at the back of his gums where they're supposed to be. However, they will eventually move forward from the same tongue pressure.
Then he went on to explain to me what will happen to his jaw as he goes through the next two growth spurts of the mandible.
"Yes, but you see? I've taught him to respond to a prompt to close his mouth. We prompt him about a million times a day so eventually it should just become habit."
So he had me tell Asher to close his mouth, and the doctor very carefully moved Asher's lower lip. There was his tongue...out past his teeth. This picture is pretty classic. His lips are most often pursed when closed because it's hard to close them over his tongue.
"Well, but you should have seen how big his tongue was a month ago. It's shrunken significantly since then."
The doctor explained to me that it won't shrink much more than it already is, and why.
"But won't he have more room for his tongue once those giant tonsils are out?"
Possibly, but not enough to compensate for his tongue.
From there we went to have a booth hearing test done. I'm very well versed in these. Not only worked with them for years, but Angela has a moderate bilateral hearing loss and wears hearing aids. I knew they wouldn't be able to train Asher for the booth today. But they could do an OAE which is a good screening tool.
Asher did not pass the OAE in EITHER ear!!! I was completely caught off guard by this. His ear canals were perfectly clear, his tympanograms (measures the movement of the ear drum) were fine, so it's unlikely he has fluid in his ears. Again, this is just a screening tool so now I'm very interested in the results of the ABR when we finally get it done.
Then we went back to meet with the doctor again to go over the hearing test. Not surprisingly we weren't able to get any kind of results with the tone testing, but he did say the fact the OAE measured poorly in each ear is a pretty good indicator that we'll find some level of hearing loss with the ABR. This is when the doctor asked me if we also wanted to do a gtube.
And yes, I'm well versed in gtubes too, since Angela had one until she was four!
"Why would he need a gtube? Yeah, so he only eats mush, which is not super convenient for me, but it's doable. He's gained 7 pounds in the month he's been with us."
He asked how Asher is doing swallowing liquids.
"Umm...terrible. But he's not getting sick and I think it's pointless to do a swallow study until his tonsils are out. I know it's going to take him awhile to figure out what to do with all that space in his throat, but I say lets give him a chance to prove to us he can't do it before we go jumping into a gtube."
No...not even thinking about a gtube right now. Nope.
But that tongue....I don't know ANYONE who's done the tongue reduction surgery, and I know a lot of people! The doctor did say it would not have any affect on his speech (of which Asher has not even one single solitary word right now.) So the biggest effect would be to his teeth and jaw, along with apnea that he said will likely be a problem even with his tonsils out because of his tongue.
Dean and I are at a loss what to do with this information. For now, we're doing nothing until after his tonsils are out and we can see how he does with more space. I know it's an incredibly painful procedure. So, I'd like to hear your thoughts. Help me think this one through.