Friday, February 27, 2009

Diezel was born 1-22-2008. On the third day of his being on earth we were told that he was deaf. I think I was in shock because while I was pregnant I told my doctor that I thought maybe he was going to be deaf. During the day he slept in my belly, through six kids being loud and noisy but at night when all was quit and I went to sleep he would move around like no ones business. My doctor told me to stop worrying. I do worry about EVERY little thing. So I listened to him. I talked myself into believing I was being ridiculous. If we were going to have another deaf child we would have already with the last six. So when my doctor came in with the news that our baby boy was deaf it was hard. I hadn't allowed myself to be prepared. I like to ALWAYS be prepared for EVERYTHING...and as we know that will NEVER happen. I had been through this before, I knew I could do it. I knew I was better prepared. I went home with my beautiful son and gave myself a few days before I told everyone. I didn't want all the advice and "oh it will be fine" speeches. I wasn't ready to let go of what he would never have. I'd say that lasted about a week. I was taking a shower and talking to God as I often do and a peace came over me. I knew then it was okay, everything would be okay. I got dressed and came out and told my husband he could tell our family and friends. I wouldn't trade him for nothing..I chose to believe that God thought I was worthy of such a precious gift not once but twice...Diezel was fitted with hearing aids at two months old. He didn't get a lot of use out of them. At first it was okay because he was to little to mess with them but by six months he would pull them out and I would put them in. We would do this allll day. I don't think he heard a whole lot with them. We knew right away we wanted him implanted. We looked at all three choices of cochlear implants and decided on Nucleus Freedom. It was a very smart choice in our opinion. He was implanted on December 15 and hooked up December 31st. We didn't notice any difference at first. NOTHING..We came back in two weeks and they remapped him. We could tell a little bit of difference but not much. Then in two weeks we put him in the booth and he actually would turn to the little toys that turned on and lit up when he heard a sound. He was hearing the high pitches but not the low ones. So they remapped it and WOW what a difference. Our cochlear implant team has told us they are amazed by Diezel that they haven't seen these kind of results only being hooked up for two months. They said he is doing awesome. We would agree now that he is mapped right, he hears, it is obvious. You could tell he was hearing sound but he had no idea where it was coming from. Now he knows his name when called. He is saying dadda, making the sound of a sheep, BABA. He still is having a hard time localizing where the sound is coming from. Oh he knows that someone is talking from a phone because my husband is a trucker, I am on the phone with him allll the time so he puts the phone to his ear and says dadda every single time..I am so pleased. I like the Nucleus Freedom. I like that the batteries go inside of the device. They stay charged forever. The device that goes behind the ear isn't to big. I like the body worn. We use the clip that attaches to the device and clip it to the side of his shirt and run the wire up to his magnet. I have been blessed that our son as done so well. We have an awesome team working with him, that helps. He is getting speech from the school speech therapist twice a week for thirty minutes each time. He gets speech from the hospital twice a week for thirty minutes each time and the deaf educator comes out twice a week. We are so lucky. I won't take this for granted, Diezel is getting bombarded with language from excellent resources including us and his siblings. It is definately easier when you have gone through this once before so you know what outlets there is out there for you. We still have chosen total communication as we did with our oldest. Just because they can hear doesn't mean that they are not still deaf. You take the cochlear implant off and my children are deaf...

A little history

Douglas was Born 2-15-1993. I didn't discover he was deaf till July 4th. Back then they didn't do a screening for hearing in the hospital. When we thought he was deaf we went to our family doctor. When he opened the door to the room Douglas looked towards the door. He said, "oh he can hear, he heard the door open." FYI, most deaf people have excellent perifial vision. Well he told us that even if he has a hearing problem he would be fine till he was a year old then have him tested. My mom didn't except that answer and she called e.n.t specialist till she found one that would see him without a re feral. They tested him and told us they were sure he was profoundly deaf but they would like to refer us to Boystown National Research Hospital in Omaha Nebraska. Once there we discovered he heard at very high decibels in the low frequencies and pretty much nothing in the high ones. They fitted him with hearing aids and went with total communication. We made sure to have him wear them always. People would ask how we got him to keep them in. Persistence is what we would say. He did better than everyone expected but by six we realized that his hearing was very limited. We looked into a cochlear implant and he was excepted as a candidate. I knew nothing about them and as a young mom just went with whatever was offered. Woulda, shoulda, coulda gets you no where and I can't go back. When he was hooked up he didn't cry or get upset he wanted his hearing aid in but we told him to leave this on for now. Being six it was nice that he could communicate by sign and some voice to let us know he was hearing. A straw pulling through the plastic lid from McDonald's was so fascinating to him. Everything he heard he would stop and ask "did we hear that? What is that?" When he was implanted they only had the body worn. He had a fanny pack he keep the device in and the wire ran up under his shirt and through at the neck to connect to his magnet. They were working on the behind the ear and we received a voucher to get one once they were out. He has done well with them. I say "them" because he was implanted with his second about seven months ago. Advanced Bionics' batteries are not as they should be. They are suppose to hold a charge for up to fourteen hours. They last about four hours so he has to keep at least four batteries on him or he goes deaf. Also the prongs that connect to the device break easy. Other than the batteries everything has been well. He talks almost perfect. He signs just as well and I love that about him. He has had his ups and downs but for the most part, I think he is a well rounded, typical teenager.

Thursday, February 26, 2009

From the top then Left to right....David, Dawson 9, Morgan Danielle 9, Devin 13, Douglas 16, Diezel 1, Lisa, Decemberlyn 7 and Destiny 3

A poem from Douglas..

My son wrote this for his english class and I thought it was something I should share with others. I think this about sums it up for a deaf child....HOW SPECIAL!!!!!

Born on February fifteenth of nineteen ninety-three, I was born into a world of silence. To see the faces around me made me happy but to not hear the words from their mouths made me sad. My world changed as I was implanted with a cochlear implant….
A day of sound…
I am from December of 1999.
From a deaf baby to a hearing boy
From beautiful faces to beautiful voices
From only knowing silence to a world of noises

I am from hard work and perseverance.
From deaf educators, speech therapy and reading lips
From the use of sign language and using my voice
From signing my first word to learning to say my first word

I am from God.
I am from family made from God, He who knew they needed me and I them
From trust, faith and security
From a Family who stands strong beside me to God who lives within me

I am from never giving up.
From deafness, the hurt from surgery, and recovery
From hearing each sound, every noise and learning it’s source
From realizing my mistakes and trying over again and again then getting it right

I am from misunderstandings
From deaf to hearing, it’s hard to see that words deceive me
From words I hear, no meaning till I can see them and still achieving
From knowing this and still willing to try

I am from coping.
From making it work, figuring it out, and still moving on
From heartbreak, heartache, and still loving
From sadness and emotion and yet I let go
From frustration and confusion and yet I succeed

I am from a deaf culture and a hearing world.
From those who sign and those who speak each different
From unspoken words and words spoken out loud
From deaf understanding and fighting to make a hearing world understand

I am from a cochlear implant.
From deafness, hearing sounds and noises a plenty
From words, sentences, paragraphs, and complete stories
From my world and yours
From understanding that I have a voice and a cochlear implant to hear it

My boys

My boys are Douglas, who is 16 and Diezel who is 1. They are both implanted. Douglas is implanted on both sides and Diezel only has one. We are trying to get an ear infection to clear up so we can proceed with his second side.
Diezel was in the cylonder checking his balance. Douglas went in with him for this test. They had stopped for a moment and I think Diezel was saying "ENOUGH"...