Progress... Possibly?

Pauly Butters has been activated with his new right ear for about six weeks now.  Have I seen any changes?  Yeah, I think so.  He forms many more consonants now than he did with hearing aids.  He is still very vocal, but he has more quiet spells than before.  Lately, he's been pulling out his books, especially the ones that play music, and he can sit with those books for quite some time not making one single peep.  It still makes me a little nervous when he's in his room reading his books because he gets so quiet that I worry that he is up to some kind of mischief - which happens pretty often.

What has really surprised me since activation is that he is trying so hard to imitate our sounds at home.  He can even change his sounds when we do.  I'm still learning all this audiology lingo, but the best way that I can describe this situation is when he is making his long, "AAAAHHH" sound.  I will ask him if he can do the shorter, "Ah Ah Ah" instead.  As soon as I begin the sound change, he will change it to that shorter sound.  This never happened with hearing aids.

I am holding on to all these positives because I have to.  This is what gets me through all of the "Learning to Listen" lessons, the animal sounds, explaining how to make the bed every morning, getting in key words and phrases in as often as I can, explaining every freakin' detail of washing the loads of laundry every day until I feel like I must commit myself into a nervous hospital.

But this is the first time in almost a year that we finally feel like all of this is paying off.

We still have so far left to go, however.

And then, there are the gross motor skills...

At almost fifteen months, he is still not walking yet.  He is a proficient cruiser and has begun to stand by himself for about five to eight seconds before plonking down onto the floor.  By observing his movements for a few minutes you can tell that he knows that he is not ready yet to walk. His fine motor skills are divine, however. I am not overly concerned at this point, mostly because I am trying to store up what little energy I have left to kick myself into overdrive to begin to really chase after him when he does start to walk.  I will say that the whole LVAS thing creeps back into my thoughts making me worry that it's the thing that is holding him back with gross motor skills.  How much is the disorder affecting his motor skills? Is his "wobbliness" just due to the fact that he is a toddler?  And more importantly, how much will it hinder him in the future?  When do you intervene, when do you really start to worry? 

I began drafting this post early yesterday morning, so I have a little more to add.  For the last couple of weeks since Butters' first sound booth test, we have been trying to set up his second CI surgery.  As it stands now, we have tentatively scheduled his second surgery for the end of August.  This is taking into account that we have to have time to work with insurance and see how easily they will grant us this second surgery.  It was not an overly, arduous task the first go-around, but we aren't sure with this next one.  Also, UNC Chapel Hill is one of the top hospitals for cochlear implantation.  August was the earliest month that we could get the surgery scheduled if you can imagine that!  Not to mention that our fabulous ENT is also a hot commodity right now and we had to be worked in to see him in June for a regular visit. 

Until all of this happens, I am steeling myself to get prepared.  Kind of like Nat Geo's "Doomsday Preppers" (yes, I love that show),  I am already prepping to fight for this second surgery.  I'm pulling out old paperwork, already making calls, pulling out phone numbers of contacts, looking up research on the computer, building a bunker and storing up massive amounts of Cheez-its, oatmeal cream pies, and rum.  Okay, that last one is a little exaggerated.  But I have a feeling that I will wish that I had a little hideaway such as that when I am fighting with people to get this surgery approved.

Holy Beejeezus, here we go again.