07 March 2012

At least now we know

We finally have a prognosis for Little Pb. It's not good, but it could be worse. The other day a friend told me that this is not a tragedy, and she is right. It's a challenge. And it's going to be hard to overcome it. Actually, we will not really overcome it. He is deaf, and he always will be. But we may be able to help him hear. And speak. We may not, and that will be fine too. I just need to process all the information I have been given in the last couple of days, start my own research, and get to the task. The prognosis is Auditory Neuropathy. If you want more info about it, go to the link, but it basically means that his ear is fine, his cochlea is fine, but the nerve that connects them to the brain is not working properly. The worst thing about AN is that it doesn't really have a cure. And treatment varies from one kid to another, including the possible outcomes. So far it seems like we have a plan. We are going to try to habilitate his hearing and speech. That means that we are going to be seeing a speech therapist and an aural pathologist who will try to teach him how to hear and talk. I know, how do you teach someone to hear? I'll let you know when I find out. Right now we have appointments for them for the last week of March, but I called our audiologist to see if he can do something to move things faster. His ENT also wants him to undergo an MRI, just to make sure everything else is fine. It sounds like a lot, but it cannot be worse than seeing him go under yesterday. He was a champ, and it's unbelievable that after spending two hours under anesthesia and having a procedure done today he is back to being the happiest baby of the world, all smiles and giggles. The broad plan is to try therapy for a few months. If that's working and we see progress, great, we keep doing that. If it doesn't, we may try a hearing aid. They don't usually work, but is worth giving it a careful try. The last resort would be a cochlear implant. Which could not work, either. But we have many months until that.
This whole thing sucks. For many reasons. Not So Little L also needs our attention, and he is not getting as much as he is used to. We still should be able to live somewhat normal lives. But if you look at my IPhone calender for the next month, you would see that it is impossible. I don't have time. On top of all this, I decided to go back to work a month ago, and I start teaching again on March 26. And I have also accepted a small translation project. I'm looking forward to both, because they will keep me busy, but at the same time that's time that I won't be able to spend stimulating my baby.
Eventually, I hope to be able to go back to normal, trivial, frivolous posts. But for now, this is what it is. And my next question is... How do you raise a bilingual deaf child? That seems like a quadruple jump with loops...
About the ear tube surgery and sedated ABR test done yesterday, I have to say that it was unnerving to spend two hours waiting for them to be done, but everyone was great with us at Children's Memorial Hospital. Which was more than welcome. Northwestern doesn't always have the best bedside manners, but yesterday they were great.

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