I am late in writing this as we just got home from the hospital yesterday. Last week, I noticed a lump on the side of Ava's neck. I was told to bring her to the hospital at the same time she picks up her equipment as the clinic is just down the hall from the audiologist's office. Turns out Ava developed an infection in one of her lymph nodes which caused it to fill with pus and swell to about half the size of a golf ball. We were absolutely terrified and were so relieved when we learned it was only an infection. We didn't like the fact that she had to be put under general anesthetic again but it was only for about 15 minutes tops so the surgeon could drain the pus. It really put a damper on the excitement about getting her equipment, etc. but now that we are home with some powerful antibiotics we can finally relax and concentrate on educating ourselves on her new "ears". We picked up Ava's new "ears" Tuesday morning just before being admitted to the hospital. We received a detailed tutorial on the equipment from the audiologist. She gave us two huge boxes of stuff - extra cables, batteries both disposable and rechargeable, recharger, accessories for keeping the equipment on her ears better, drying/sanitizing kits, etc. I read through the manual while Ava was in the hospital so I am all pumped and prepared for the big ACTIVATION DAY!!! Below you will see the coil, which is the round thing on her head. The coil contains a magnet to allow it to stay connected to the implant beneath the scalp. The piece on her ear is called the processor, which contains little microphones to pick up sound and convert it to electrical impulses. The electrical impulses are transmitted through the coil, which then transmits it to the implant under the scalp, which in turn stimulates the auditory nerve. The long wire down her neck is connected to the controller, which is clipped to her clothing. The controller holds the batteries and contains the customized settings (such as volume, sensitivity levels depending on whether she is in a noisy environment, listening to music, in a quiet environment, talking on the telephone or just for everyday listening). Once Ava is about 2 years old and her ears are big enough, the controller will be connected directly to the earpiece processor and worn as one piece behind the ear.
Now Ava is to wear this equipment, unactivated, so that she gets used to wearing it before they turn it on. Because of the surgery she had Tuesday night, we delayed putting the equipment on until today. So, I'm thinking, I've seen how it all works, read the manual, piece of cake; I mean I have hearing aids myself so how hard can it be??? BOY WAS I WRONG! It was not easy getting the equipment on her head at all. I sat her on my lap and doesn't she arch her back, kick her legs, cover her ears with her hands, grabbing my hands, her ears, her hair, ANYTHING to try to stop me from putting the damn things on her ears. I mean who can blame her after all the poking and prodding she received at the hospital being admitted twice since her implant surgery. After I finally got the processor and coil on the first ear, I start putting the equipment on the other ear and well doesn't everything fall off the first ear while I'm trying to put on the other ear! And then the coils fall off while she is squirming. And then the processors fall off again. Fall off Fall off Fall off! I look at my husband and say just how is she going to hear if everything falls off so easily? Out comes the super sticky toupee tape which is quite cumbersome because it is double sided tape and trying to peel the backing off of it is next to impossible. So I tape the processors to her ears and that seemed to do the trick. I adjusted the strength of the magnets so that the coils wouldn't fall off so easily. You have to be careful with the magnets that they aren't adjusted too tight as it will cause sores on her scalp. After lots of tears (both mine and Ava's lol) we FINALLY get everything on and to stay put. On the advice of some other moms I bought a couple Hanna Anderssen pilot caps and put one on so that she can't try and pull her equipment off. The cap looks great and holds everything on nicely. The audiologist told me that once Ava makes the connection that the equipment is what is giving her access to sound, she will readily keep it all on.
We have to remember, that while the equipment looks daunting and weird, it will allow my DEAF CHILD TO HEAR. Young children weren't implanted until the 1990's. Prior to that time, being profoundly deaf meant communication by sign language, going to a deaf school and never learning to speak. NOW my deaf child will hear and speak. She will be mainstreamed at a regular school and will speak just as well, if not better, than her hearing peers. This is nothing short of a miracle.
"A man, as a general rule, owes very little to what he is born with - a man is what he makes of himself"
Alexander Graham Bell