I Hate LVAS!

I know that newly-diagnosed families search out and read blogs all the time. I always want to be upbeat and positive about how Thomas is doing with LVAS. However, I can not do it today...

Since diagnosis, I have said many times that I hate what this has done to Thomas, to me and to our family. However, I have never said that I hate the diagnosis...until now. I hate, hate, hate, hate enlarged vestibular aqueduct syndrome! Okay, I feel somewhat better now.

Unless you are familiar with the syndrome, and if you are your already know why I hate it, you don't know that the hearing in each ear can fluctuate at any given minute. Dealing with a two-year old that can't tell you what he is actually hearing makes it increasingly difficult, if not impossible, to determine on a day-to-day or hour-to-hour basis. Ugh, it makes me want to scream just writing about it.

So, here is where we are today. Thomas has amazing receptive language. I can tell him that we are going to get in the car to go to school and that he needs to get his shoes before we go. If I give him appropriate wait time, as directed by our wonderful AVT, Ms. Becky, he will go to the cabinet, grab his shoes and bring them to me. Then, when I ask him, "What do you have?" He says, "oos." However, this is said with a closed-mouth...like so many of his low to mid-frequency words (he will only say, "sh" in isolation). He is saying pretty much all words or word approximations in the low to mid-frequencies with a closed-mouth.

For example, we are singing the song "One little, two little, three little, Indians." I sing the first line and look to him to fill-in the word "Indian" or at least some sounds to know that he is hearing what I am saying. He is giving me the appropriate inflection and sounds back to me, just with a closed-mouth. He is says the following words with a closed-mouth:

All done
more
out
ouch
moo
go
shoes
choo-choo
again
ah-ah (for the airplane)
wee
hi
bye-bye
up
down
oh goodness, I've lost count.

I have emailed our beloved audiologist to see what she thinks may be going on with Thomas. Make no mistake, we love our audiologist. She rocks this world and has helped Thomas beyond belief!

This may not be an issue about what Thomas actually hears. It may be how he is processing the sound? Maybe because of his sensory integration issues his pain threshold is higher than it should be and that his CI is up too loud in the low to mid-frequencies? Maybe he has lost or gained hearing yet again? Maybe he is being lazy in his expressive speech and as a typical two-year old, he thinks he can get away with it? Maybe his lack of eating skills makes his word development incorrect? Maybe his mom is a complete and total freak for worrying that her two-year old son who was activated less than four months ago isn't talking in a way that other people understand? Or maybe my gut is right and some "thing" is just off with Thomas and we haven't discovered what that "thing" is?

So until I have an explanation of what that "thing" is I tell you today, "I HATE LVAS!" I hate it because it is the only "thing" that I truly understand when it comes to the challenges that Thomas faces...I hate it because so little is understood about it...I hate it because Thomas has it and it is completely out of my control.