Some Answers and Even More Questions and LVAS

Butters did really well at his first hearing booth test yesterday. His attention span held out longer than I thought it would, mostly due to the nice lady blowing the magic bubbles. He turned his head in response to the really loud low frequency sounds. I'm not really surprised by this - and he was tested without his hearing aids. This first test really was supposed to give an indication of how we could expect him to perform during the next tests coming up. Unaided, we got responses at 80-85 decibels. Not good, but at least it was better than 90 db which was what he was responding to back in May during the ABR. However, as our audi explained, when you get the responses at the louder sounds, you're teetering into the vibratory sensations versus actually hearing the sound. Did he really hear that or was he only reacting to the vibrations of the loud sound. I can't obsess over that right now or it will drive me crazy - more crazy than I am at this point.

 He sure as hell reacted to the ENT shutting the door and he was too far away to feel those vibrations. The toy lions in the dark cubbies used to reward him for turning in response to the sounds being played did the trick for him. However, after the first lion came out of the cubbie with the lights flashing and the head moving, Butters kept turning his head every few seconds waiting for the lion to come back out. The audi assistant managed to capture his attention with bubbles and toys, but only for a minute and then he would turn his head again to wait for the lion to come out again. He would get this look on his face like, "Why do these idiots keep turning off that awesome toy?" So, another hearing booth test is scheduled for next month and in November. It did make me hopeful that our audi believes we will know where we stand as far as his hearing goes by the end of the year.

 Also, our ENT was able to provide us with the MRI results which showed that Butters has LVAS/EVAS. And they want to schedule a CT scan to get a better look at the cochlea. Fabulous. More tests. Everyone, including the audi and ENT feel very encouraged with his progress. Our families feel encouraged. Why don't I? I still have questions. I think I have more questions now than I did when we first found out about the hearing loss. I've been doing some research into LVAS and I still have a ways to go but it's making me questions a lot of things:

•  If LVAS tends to affect children a little later, then it should be unusual for Butters to have the hearing loss pretty much at birth - he failed both NICU hearing tests. 
•  If LVAS causes fluctuations in hearing loss, will cochlear implants solve this problem? 
• And... holy crap, if a bump on the head can cause worse hearing loss what will Butters' range be with all of the head bumps he has while he rolls around on the floor? 
• The greater the hearing loss the less likely that there are any other cochlea deformities - this I don't really understand all that much
• Butters still can't sit up unassisted and when he's on his tummy, his head is still so wobbly, is this due to the "Balance Problems" that can be associated with LVAS that our ENT discussed?
•  Our ultimate goal is for him to have cochlear implants - how does LVAS factor in with this? 

The list goes on.  

I just need some time to process all of this.  I'm not upset, but I don't really know how to feel about this information.  I do feel as if just when I navigate my way past the brick wall, another, much larger one has been suddenly placed in front of me - right where I had just for a second been able to see clearly.  I feel as if I can't keep trying to make my way past all of these brick walls - at least not without completely burning out.  And I'm so tired of all these tests my child has to go through.