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.

A leap day I would have liked to leap over

February 29th 2012 was a gorgeous day in Chicago. I started my day at 8:30, going for a walk in a wonderful and breezy 55 F/ 14 C degree weather. That would have been a perfect start for a perfect day if it wasn't because the walk was taking me to Children's Memorial Hospital, where my baby, little Pb, was going to see an audiologist and then an otolaryngologist (ENT doctor). For months we have been thinking he was not hearing well, for months we have observed that he wasn't babbling at all (until, of course, the day I set up those appointments, when he started to babble a shy neneneneh). We took him to the pediatrician, we had an audiology report done in December, I took him to an otolaryngologist in Spain, and other than a mild hearing loss, he seemed to be fine. We were told that his ears were in perfect shape, or in the worst case, he would have fluid that was easily removed with ear tubes. But yesterday, in a more comprehensive audiology report, they saw that he was not responding at all in one ear, and only to elevated sounds (beyond 90 decibels) in the other. He pass the preliminary physical tests because the ear itself is fine, but he didn't pass the Otoacoustic Emissions Test. Now we are scheduled for a sedated ABR (Auditory Brainstem Response) on Tuesday. In that test they will place electrodes on his head to measure the brain's response to sound. At this point, they suspect he may have Auditory Neuropathy, which means that the nerve that connects his ear and his brain is not working well. Doctors don't seem to know much about it (according to Google, because no other doctor is giving us any information at this point), and it appears to be difficult to manage because it's unpredictable, it fluctuates, and can change from hour to hour, day to day, week to week or even month to month. Sometimes they hear something, sometimes they don't, and it fluctuates on the same child. That makes it difficult to treat. Apparently one of the options is a cochlear implant. But we are not there yet, we need to wait for the results. So far, they include an ear infection. his ears were perfectly fine yesterday at the ENT's, but today when I took him to the pediatrician for a pre-test physical he had an ear infection on his right ear, and fluid in both ears. Sigh. Now he is on antibiotics, and I cross my fingers so this doesn't interfere with the test.
So far, my next week has a speech evaluation on Monday, ABR test on Tuesday, otolaryngologist on Wednesday. That doesn't include music/soccer/Dr's appointment for me, Dr's appointment for "not so little L" and whatever else gets peppered on our week. Do I scream? I think I'll rather keep doing laundry and have a glass of wine and a cigarette, because it seems that, once again, we have a long road ahead of us. Plagued with decisions. Thankfully, I have an aunt who is an specialist in speech therapy, and a very good friend who is an specialist in disabilities and has been working closely with the Deaf community. At this point, all I have are questions. Starting with: How do marriages survive in these circumstances? I'll keep you posted.