Here's where Gabbie & I have spent the last few days...
And here is the reason:
http://www.doctoronline.nhs.uk/masterwebsite1Asp/targetpages/specialts/images/ear.gif Bear with me since I'm not sure how to put nifty links in here without the whole web address.
At any rate, she first failed a school hearing test at age 9. We did as recommended and had her re-tested at the dr's office since it was possible that she was just distracted during the school nurse's test. Failed it at the dr's office. Ok nothing major to worry about, go back in a year if she fails again. Next year at age 10; same result and saw a specialist who thinks it's Otosclerosis, but since she's young it's uncommon. See us again in a year. Me thinks maybe it's odd, but dr must know best. Age 11, she failed again and this time we were sent to Boston to see an otolaryngologist with Children's Hospital. He agreed that it's Otosclerosis,but she's still so young that surgery isn't recommended.
Flash forward to age 12 when we're in another state and see another dr who says that hearing aids will be the cure. Ok fine, never did I think I'd see a child who WANTS them, but Gabbie did. She got to pick out what they'd look like and chose sparkly bubble-gum pink. We rejoiced when she wore them for the first time and could hear us! She heard everything and it was LOUD. In fact, we stopped for lunch on the way home from that hospital trip and she actually had to turn the ha's off because everything was too loud! With time she got used to them. What she found out though was that the ha's only increase volume and Otosclerosis is about clarity as well. Ahhhhh something that the ha's cannot fix. Gradually, she stopped wearing them and continued to muddle through hearing what she could and us repeating ourselves. It made life difficult in school and socially because she couldn't always hear what was being said and some kids thought she was just dumb or ignorant. Don't get me started on THAT one.
Back in Boston again, we went for her annual hearing exam. Not surprisingly, Gabbie's hearing had diminished further. However, we had the good fortune to be scheduled to see the top Neuro-Otolaryngologist in the country! After Gabbie's hearing exam, my hearing was tested. That's another piece of the puzzle. How did this 9yr old girl get this disease so young? Was it hormones, heredity or maybe both? Well, my father as it turned out has Otosclerosis, but was no dx'd until late in life and he wears ha's. The option of surgery has never been suggested to him, not sure why. How then did it go from my dad to my daughter? Could I be a missing link? Well, yes indeed I am! As the hearing exam revealed to us, I too in fact have Otosclerosis. Mine is very mild and at age 40 that is to my benefit. Hopefully, it will not progress quickly, but only time will tell. Gabbie had 56/55 % loss in each ear at now age 14 and my father at 66 has 76-80% loss in each ear. I count myself as fortunate as you can imagine.
After the audiology tests, we met with the doctor who was considerably younger than I expected, but clearly knowledgeable in his field. He examined Gabbie's ears and within a few minutes asked her if she wanted an operation that would fix it. I thought she was going to hug him!! She was SO excited!! He also informed me that he could do the surgery for me if I ever want it. He went on to explain that she was right all along when she would tell us and others that her ha's don't help her and in fact he was disappointed and puzzled about why the dr who saw her in CO told us that surgery wasn't a good option for her. We discussed the risks, benefits etc and went home to discuss it and by the end of the day booked her surgery.
She had her first stapes surgery on Thursday. In some cases, it's day surgery,but since she tends to get quiet nauseous and dizzy, they opted to keep her overnight for observation. Lucky they did, since she had severe side effects. We were told that about 1% of patients has blood (mere couple of drops) fall into the ear canal and that increases the volume of fluid which sets your balance and such with your inner ear. Guess who is in that 1% ? Yep, my girl. We ended up staying in the hospital until Sunday afternoon and now she is home and bored, but resting comfortably for the next week or two. She has restrictions, but if all goes according to plan, we will see the good dr again in 6wks for a hearing test and she should have 90 hearing in her right ear. At that point, she has the option of having the surgery done on her left ear. And despite the awful nausea, dizziness, pain etc she wants to have it done! She said that it's worth it to have a lifetime of hearing. I'm proud of her; very proud. After watching her these last few days, I don't know that I would choose to go through what she is going through. She's a strong willed young lady and she knows what she wants. She can't do much for herslf right now since she's not mobile yet, but she's not letting it get her down. And since the dr said that her surgery went very well otherwise, in a few weeks she should be hearing things she hasn't heard in years and that will be an amazing thing for her.
I have to plug Children's Hospital in Boston. The drs, the nurses, everyone was so kind and so caring. They really treat each patient and family with care, concern, humor and friendliness. We met people with all different personalities, ages etc and each was just as nice as the next. It really makes it easier to be in hospital when you're treated well and not like you're just another person they have to deal with. The nurses were funny and friendly, the Child Life Specialists gave Gabbie things to do, the drs treated her like her own person and spoke to her instead of just speaking to me becuase I'm the adult. We plan to return there in a few months for Gabbie's next surgery of course and I expect that it will go just as smoothly as this one has.
Thank you for the love, prayers and good wishes for Gabbie; they have been very special and we love and appreciate all of you for taking the time to send them.
