Wednesday, December 23, 2009

Day Three

It seems odd to start with Day Three, when so much has happened prior. This blog is about me, my family, our history, and the challenges that we face daily. I hope that you will see faith, hope, and love as we struggle to live our imperfect lives.






Today is December 23, 2009 and my daughter Katie and I are heading to UVA to have some adjustments made for her cochlear implant. This is her second one. The first was not very effective however, we are finding that paired with the second, it is decreasing the amount of ear noise that she perceives. You have no way of knowing how wonderful our visit was on Dec. 21 (more about that later). You see, Katie has been totally deaf since March of 2009 due to NF2. Essentially, our whole family has been deaf since March. I'm learning that what effects one of us, effects all of us... just in different ways.




Neurofibromatosis type II causes tumor growth within the nervous system. Many people dealing with NF2 don't know that they have it until they have difficulty with their hearing. Imagine, a vibrant, active, happy (for the most part), intelligent 19 year old waking up and finding that they can not hear on one side. As a parent, you go through all of the typical questions and seek medical care that seems helpful but often isn't. We didn't really know what was happening until we visited the ENT. He thought it was odd that she was not hearing at all on her left side when there was no visible reason for it. He sent her for more testing right away and that's when the MRI's showed that she had bilateral tumors on her vestibular nerves (balance nerves) that were causing damage to her auditory nerves. The MRI also found three in her brain lining and at least five in her spine.




There isn't much research on this disease. We know that it is usually inherited however, in Katie's case it seems that she is one of the lucky few who have had a spontaneous gene mutation. I'm not a geneticist so I'm not going to dwell on this but let's just say that at this point in time we have been on the craziest roller coaster ride that any family could imagine. All of the stages of grieving, the questioning, the guilt, the wondering about where this came from and why and then finally accepting it for what it is and putting our trust in God for his help and guidance.




Katie is now 23. She has had surgery on both vestibular nerves and they have been removed. She has had two surgeries for the cochlear implants. Now, we have to watch and monitor the tumors in her brain and spine. They could stay dormant for years or just start growing. We have decided as a family that dwelling on the what if's is not productive so we'll just take each day as it comes. As of today, hope springs eternal! It is almost Christmas Eve and we are returning to UVA for a follow-up from Day One.




Day One is the activation day for the implant. For Katie's first implant, Day One was disappointing. It didn't really work well but we knew going into it that there was significant damage on the left side and although the nerve was intact, the damage may have been too great. She did receive some benefit, some sense that people were talking, some sense that things were going on around her, but not much.




Day One for this implant was miraculous. She could tell different pitches, different amounts of sound, could hear paper rustling, tires squishing slush on the road...the turn signal in the car and even the click of computer keys. I wish that you could have been there to see her face the first time she "heard" something! I cried--of course. Each day has been a little better as she gets used to the amount of sound, the quality of sound, and the fact that just about everything in the world makes noise. Making the two hour trip to UVA is now something to be excited about, not something to dread.

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