Sunday, October 11, 2009

Ian Bian and his bum ear...

Ian's first week was tumultuous at best. He came into the world, upside down, with an intestinal blockage, and one bum ear. When he was whisked from my arms and transported to OHSU in an infant ambulance I (of course) thought the worst. His week long stay at Doernbecher hospital was agonizing. His full term 8lb body lay next to teeny tiny preemies weight in at 2lbs. Doctors would come in groups for rounds and speak about him as if we weren't sitting there wondering when and if he would eat, or poop, or pee or something.

After several days, his blockage cleared without the need for surgery and we were finally released to go home. Over the course of the week, with bigger fish to fry so to speak. We never paid attention to three consecutive hearing test failures in his left ear. So now, 2 + years later we see specialists at Doernbecher to monitor his hearing loss. Friday was his most recent appointment.

All tests were conclusive to prior, his right ear is great. His left ear is not. He can only hear sounds at 80-90 decibels which translated may be the loud hum of a vacuum...Eureka not Dyson. Even still if your yelling, singing or talking right up next to him he will not be able to decipher what your saying, from that ear.

Fortunately, and as most of you know that spend time with him. An outsider would never guess he has hearing loss. In fact, I go days and days forgetting he has this impairment because frankly, he's not impaired. His speech, behavioral and developmental skills are right on par (if not advanced according to me). For months we had an intervention woman come to the house to check in on his progress, track his development and recently she decided her visits were not needed and probably a waste of our time. As Ian was doing just great.

He struggles with spacial location and may have trouble with Marco Polo, or hide and seek as Alex giggles from behind the desk chair. I have to remember to put the phone up to his right ear when he chats, and every day for all his life he will speak on the phone on his right side. We will have to be careful to teach him about crossing the street and REALLY looking both ways as he would not hear a car coming from his left. He'll probably have to sit closer to the front and school. He tends to turn the volume up on the radio and tv louder than necessary, and I'm learning to come to terms with that. The boy LOVES music, and is happiest with a loud bass THUMP in the car. He loves to dance and has remarkable rhythm.

His hearing loss is rare. It's a combination of cochlear and nerve damage. Probably a genetic defect of sorts, and we are not sure if a hearing aid or cochlear implant will help. For now, we monitor his progress and continue to test primarily to ensure that right ear stays 100%. As he gets older his tests become more involved and Friday he had is first successful testing session where he was able to pick up and answer the questions. The doctors were so impressed with his cooperation, his lovely nature and happy personality and spent the entire session giggling at his funniness and were in awe of his speech.

I felt compelled to write about his hearing loss as for the first time in two years, I left his appointment feeling such an overwhelming sense of thanks. I felt blessed that with all the things our kids could be born or afflicted with, THIS is all he had to endure. Sure it will be hard, and we wonder if his little athletic self who was born to play football will be able to hear calls through his football helmet or if he'll hear his carefully picked name 'Ian Patrick Kolmer on the tackle' over the loud speaker. Of course, if he chooses to play Chess, or pick up an instrument we'll be fine with that too. But, as I walked into OHSU, his little self walking next to me, chattering away about his shoes that were 'too tight mom', I felt so thankful.

I saw him looking at the other children. Most of them in wheelchairs. Many of them probably oblivious to our presence, some that couldn't speak or hear at all. We are so lucky. He is so lucky and I hope that he always feels that way. What an amazing reality check I had that day. Two beautiful and healthy children. I think I often take this gift for granted as I complain about tantrums, or 4 year old sassy talk. The 24 hour intense care that some children need and parents of those children tirelessly and relentlessy provide to them is remarkable. The money spent, the sleepless nights, the endless worry they mind was so full as I roamed those halls. My heart so heavy. The next time I feel overwhelmed, I will remember that moment.

Welp, the kids are playing hide and seek now and Ian is wandering around looking for his sister. I'm going to go and point him in the right direction...


Lindsey said...

What an amazing post to read. We really are truly blessed. I'm thankful Ian is doing so well and am humbled by your post.

Jenny said...

Great Post Carrie! You are right on in every way, and I'm glad that you saw this much positive in a little negative. I love ya!

kk said...

you really,really get it! thanks for reminding the rest of us. kk

Kelly said...

Carrie, what a wonderful post, you had me crying. I am glad that Ian did so well. If you every want to speak to someone else about cochlear implants, my friend teaches kids after they get the implants, and I am sure she would love to answer any questions that you have.