Tuesday, December 06, 2005

Jack's Story

Jack was born on February 27, 2002. We were so excited to have a healthy little boy. We never expected in a million years that he would fail his newborn hearing screen. We were told not to worry, that it was probably fluid in his ears and to have him retested at his 6 week check-up. We didn't worry at all. We had no family history of deafness and our daughter at the time was 2 and very much hearing. We assumed all would be fine.....boy were we wrong.

At 6 weeks he failed again. The Audiologist didn't give us results, but her face said it all. She told us that the test was inconclusive and referred us to a ENT to discuss the results. We saw the ENT the following day and he confirmed our greatest fear. Our son was Deaf!!! I still have a problem saying those words to this day. He told us our son was so deaf that he could not even hear a lawn mower if he was standing next to it. This doctor was very abrupt and "matter of fact" and to this day I hate him for the manner in which he told us. The one positive thing I can say about him is that he referred us to a wonderful doctor named Nancy Young at Children's Memorial Hospital in Chicago. We made an appointment and got in to see her the following week.

Dr. Young explained what hearing loss was and the type that Jack had. She requested to rerun all of Jack's tests herself and to have another ABR done. She also put a request in for loaner hearing aids for Jack to try. Jack's ABR results showed him to be severe to profoundly deaf. Dr. Young had Jack fitted with hearing aids that week.

Jack received his hearing aids at 3 1/2 months. It was so hard to see my baby with hearing aids on. It really hit home when he was fitted, I wanted to cry the whole visit and was shaking like a leaf when I had to put the ear molds in his little ears for the first time. His ears were so small and the hearing aids were so big. Of course, we all know the feedback issues for a child with hearing aids. We got feedback constantly. I can remember driving and they would be squealing and I could not do anything about it but turn up the stereo. Luckily, my daughter soon learned to help out her baby brother and push them back in.

The next step was deciding what type of teaching methods we wanted to use. With so many choices we decided to go with Auditory Verbal Therapy (AVT). I have to say choosing this type of therapy was one of the easiest choices we have made in our lives! AVT seemed so natural and the outcomes of these children are enormous. We wanted our son to be fully mainstreamed and be able to communicate with family and friends and to lead a "normal" life.

Jack started seeing Lynn Wood, a wonderful Auditory Verbal Therapist at 4 months old. She has been my rock through our journey and I don't know where we would be without her. With AVT the main task is to narrate everything. Explain everything you are doing in your day, what he is playing with, what he is eating, doing crafts, reading books, singing songs, etc. Everything I would have done with my daughter I did with Jack, but with more narration. We talked, and talked, and talked some more. To this day we are still talking.....nonstop.

Jack, we believe had a fluctuating loss which made it hard to tell how much he was getting from his hearing aids. One day he would turn to his name, the next day I would have to touch him to get his attention. This time was very frustrating for us and without experience in raising a child with hearing loss we didn't know what to expect. We later learned this was not normal and that he should be turning to his name without our tapping or visual cues.

At 19 months we decided to have Jack screened for a Cochlear Implant (CI). Believe me, this was not a choice I wanted to make. Thinking of putting my son through surgery scared me to death!!! We were told after his first screening with the CI Audiologist, he was indeed a candidate. We soon had an appointment to see Dr. Young again. She discussed the surgery and eased our minds on what the surgery entailed and what a benefit a CI would be for Jack. We received insurance approval within 4 weeks and soon had our surgery date.

Jack was implanted on January 17, 2004. We choose Advanced Bionics due to the fact that Jack was still taking off his hearing aids and throwing them. We figured the microphone on his head and not on his ear would be the best choice. Another reason was they had just approved the HiResolution programming and we wanted the latest and the greatest for our son. Surgery went off without a hitch and Jack handled everything well. He was upset by the head dressing and the bands to keep his arms straight with the IV, but other than that he was fine. We went home that same day.

The next day Jack did well. He was a little groggy, but other than that he was back to his normal "play hard" self. His incision didn't look as bad as I expected and it healed very quickly. I have to tell you I was worried about the way his ear looked. It looked like the doctor had sewn it on wrong because it was sticking out like "yoda". I quickly called Dr. Young's nurse and was told it was normal and when the swelling went down his ear would look normal again. Guess what......it did!!!

On February 17th the day was finally here, ACTIVATION DAY!!! We were so excited and were hoping to see a big reaction at turn on, we didn't. Of course we were told not to expect much, but of course we hoped for more. I have to say we went home knowing he was hearing because Advanced Bionics has software that lets you know if the auditory nerve is being stimulated, and it showed his was. That day Jack still seemed really unimpressed by his new sense of hearing. Later in the evening my husband called Jack's name with his back turned and Jack turned to him. We were told not to expect this for a few weeks, but he did it several times that evening. We knew then and there this was the start of a new life for our son and that we had made the right decision.

After activation Jack really started to make progress in AVT. Finally, he was repeating ling sounds after 3 months of activation (he never did any of them only Ahh with hearing aids). I remember my sister and I were having a garage sale and a man was walking a dog past her house and Jack pointed at the dog and said "oof, oof". It was only 4 months post activation and he was finally communicating. Jack soon started saying animal sounds and simple words like up, hot, hi, and bye.

Jack has now been implanted for almost 2 years now. He is saying about 170 words and is starting to repeat everything. His voice quality is beautiful and does not have a "deaf" sounding voice. He really has made a lot of progress since last year. Sometimes it feels slow, but just when we start to get down he makes a big jump. He really has a stubborn streak that really hinders him from making the progress that he could. He has a lot of receptive language, but is still not age appropriate in expressive. We are still in AVT and attend twice a week. Jack will be starting pre-school this January and we are nervously awaiting that. We are excited for the future and know Jack is going to be very successful. He has such a fun personality and a love for life. With the great team we have behind us we know Jack will do well and the sky's the limit for what ever Jack wants for himself. Jack is a joy in all of our lives and has taught us more than we could ever teach him.

We are now in the process of getting insurance approval for a bi-lateral implant. We are expecting a denial, but are going to put up a fight!! Studies are proving that two implants are indeed better than one, especially in noise. With Jack still being so young we are sure Jack will get full benefit from a second imlant. For more information on Bi-lateral implants please click link found below. www.medel.com/ENG/INT/30_Advanced_topics/999_bilat.asp

P.S. Jack has been watching Polar Express. At the beginning of the movie the conductor says, "all aboard". I heard Jack say to himself "all aboard". He then came and got me and pointed to the T.V. and said "all aboard" very excitedly. At moments like this it reminds me of how lucky we are to be living in a time that allows my son to hear! We are very blessed.


Chaotic Mom said...

Your kids are so cute! I look forward to your future posts. :)

terri said...

Hi, I just got on your website from a friend of mine. My son has a cochlear implant, he got implanted at 17 months, turned on at 18 months. He is now 3and a half years old. I found your diary very honest, true, and positive. It was a pleasure to read.


kelly said...

Hi, I have a daughter who received a vendor b implant from advanced bionics in 2005 and it has now failed. We are about to go through reimplantation. I was wondering if you received any monetary settlement from the company. I was under the impression we could. I am confused and need help from someone who has been through this.Thanks,Kelly