Wednesday, April 06, 2005

Profound Hearing Loss

We had Eden's hearing appointment at Children's Hospital this morning. Despite not being allowed to eat after 2am, and having to be kept awake after 5:30am, she did really well and wasn't all that crabby. They gave her a small dose of Chloral Hydrate to sedate her. It worked right away and she slept like a dream all morning and didn't have any problems with her breathing or oxygen saturation. The testing took about an hour and confirmed our worst fears. She has profound hearing loss. They didn't get ANY brain responses at any frequency, meaning that she most likely has no hearing.

The next step for us is to make an appointment with an ENT and have an MRI or CAT scan scheduled to check out the structure of her brain and inner ear to make sure she has all the parts necessary for hearing. While we were at the appt they made ear molds for hearing aids. With the degree of loss, it is doubtful that she will respond at all to amplification, but it is something we have to try before thinking about a cochlear implant down the road. Eventually, if we do end up going the route of the implant, it would be done after she reaches one year old developmentally. That would be sometime after Nov 17.

On top of just trying to absorb all of this, and come to a place of acceptance, we have to contact early intervention and start thinking about Eden's educational future. I am a school psychologist, so of all people I should feel like I have a clue about what to do, but I am at a complete loss. I feel completely imcompetent. I can't begin to imagine what this would be like for a parent who has no knowledge or background in special ed or education. Apparantly we will have to make a decision regarding whether we want Eden to learn in a "whole language" environment (Dearborn Schools), or in a oral based program (Redford Union Schools). So far, my understanding is that in whole language they learn to communicate with sign language, in in an oral based program the emphasis would be more on learning to speak and listen. From what I gather, children who learn sign language early may come to rely on it more heavily and may not learn to speak as well. I also need to know if Eden will have to be full time in a hearing impaired program, or if there is any hope of her going to a regular school with her sister. I hate the thought of them being separated and having to go to different schools. I suppose I have LOTS of research ahead of me. I hope I will be able to make good decisions in order to get her the best help possible. I'm sad, and afraid... But I also love my babies and feel very lucky to have them...no matter what.

13 comments:

PattiRoberts said...

Dear Billie and John,
I'm sorry to hear that your day at the doctor's office confirmed your fears. I have been praying, and will continue to pray, for the Lord's healing touch on Eden and Holland's precious lives.
Although the news was bad today, please know that you have a lot of friends & family that will support you in any way we can. Please don't hesitate to call on us for whatever you may need; even if it's just a shoulder.
We love you and care deeply about your family's needs.
The pictures of the girls are such a pleasure for me to see whenever I frequent the site. Please keep them coming until I can see them in person.
Love, Patti Roberts

Anonymous said...

As lucky as you feel to have them, they are the MOST lucky babies in the world to have parents like you!! I can only imagine what your going thru , but Eden has the BEST mommy in the world to guide her thru this obstacle, and NO ONE I know will put more thought and research into every option that is available to her. You can't help but see how happy and content she is from her beautiful pictures (I know she has a spirit that can overcome anything)! I hope you never doubt the support you have from your family and friends and how much you are all loved!!! Try to keep your head up and think positive, that's the best medicine. Lots of Love Liz

Anonymous said...

i agree, wholeheartedly with liz. i love you all so much, and have the utmost faith in your ability to make good choices for the girls. please, let me know if there is anything i can do to help. hang in there!

the pictures are beautiful, as always!
lisa

Clarissa said...

I don't know you, I just hit "next blog" and here you were. I am so sorry about your difficulties. But hearing or no, your daughter obviously has a beautiful personality -- it shines through when she smiles. And with a wonderful family, as you appear to be, she'll thrive. I will pray for you all tonight. Blessings from Nashville.

Cindy said...

I am delurking to say how sorry I that you recieved heartbreaking news. Eden is lucky to have you for parents and trust in yourself that you will do the right thing for her future.
I am an elementary teacher, with a special educ endorsement. I took many courses in American Sign Language (ASL) and researched the deaf culture. I would recommend that you try to contact other parents of children who are deaf. Choosing either option will have pros and cons, but talking to people who have been there could be very helpful. I know that there is real controversy among people who are deaf regarding the cochlear implant.
Best of luck and thank you for sharing your story.

Anonymous said...

Hi- I am very sorry for this news. I've commented before because I have a micropreemie too. Thanks to your blog, I flipped out about osteopenia (which no-one had told me about) and she is now being monitored.

Because I'm also a school psychologist, I wanted to share my opinion about school choices and what I have observed here in Los Angeles. You really want to integrate speaking/lip reading asap, because the kids in the county programs who take this route catch up in signing skills, but appear to have way more flexibility in their interactions with the world. Long term, I'm assuming that's what you want.

There is a really good city program here for the hearing impaired and the man who runs it is totally deaf. He can read lips (not 100% but damn close) and oral communication skills/vocal tone/pronunciation sound totally normal. This ability will open more doors for your daughter.

Sorry if I am interfering too much. As a fellow micro-mom, sometimes it feels like I am being blindsided, like it never ends. Other times it is a joyous miracle. My heart goes out to you. She is gorgeous. Email me if you want to talk to someone who lives it too. :-) -E

michaelwxy@comcast.net

Anonymous said...

We are all here for you, and as everyone has said, you will do what's best for Eden and leave no stone unturned to give her the best. I was so touched when I met them, both are such sweet little things and with you and John as parents are very lucky. If you ever need anything just whistle, you know I will do whatever I can in any capacity to help. Big hugs and smooches. Love, Mamma Jules

Anonymous said...

Billie and John,
Know that you have friends and family that share your saddness and worries. You are about the best researchers and decision makers that I have ever met. Your clear thinking and rationalization skills, Billie, will help you and John make the best choice for Eden. I just love the hats, those 2 are just too cute. Lean on God and your friends/family to get you through the days ahead. Again, I am sorry to hear your news, but please know I love you all and you are in our thoughts.
Love, Kris

Mr Bill said...

Hello Billie and John,
I'm sorry to hear about Eden's hearing problem. Being a dad of two micro preemies myself, Ryley and Turner, I know it's difficult. It's been said before and I know you'll hear it more than you want, but as each day passes take it for what it is. I'm sure Eden and Holland will surprise you in their tenacity and perserverance.
You and John are great parents and I have no doubt that they and you will do well. You're pursuing all the avenues and leaving no stone unturned. I know that in itself will give you some comfort. If you need to talk or vent you have my home e.
My family has you in our thoughts and prayers.
Big hugs from us all,
Bill

alexandra said...

I am delurking also to tell you how much I enjoy your blog and the pictures of your lovely girls. Your stories are always thoughtful and I am sure you and your husband will make the best choices for Eden and your family. Good luck.

Anonymous said...

Dear Billie,

Although I check the site almost daily...I don't usually write. However, I couldn't resist today!

First of all, I can't believe how much the girls have grown, but I CAN believe how absolutely beautiful they are because they take after their good looking parents!
I want you to know, that although we do not talk or see each other as often as we used to, you are still in my thoughts and I am here for you always.

Also, you may remember that I worked at the "Total Language"-Hearing Impaired Program School in Dearborn. As a school psychologist, I have worked with that population and personally like the "Total Language" program because they not only use oral language but also teach sign.

What ever the choose you make, I know will be a great one. Because I know how much you care about the girls and I know you will want only the BEST for them both.

God bless you and your beautiful family and I hope to see you all soon.

Miss and Love,

Roula

Kendra Lynn said...

Dear Billie and John:
I'm sorry to hear about Eden's hearing. I know how your hearts must be hurting. I am a firm believe in God's healing touch, however, and will be praying all the more for both girls.
I will also be praying that you find the best solution for Eden's education.
Please let me know if I can do anything at all.
We all love you very much.
Take care of yourself.
Love,
Kendra

Anonymous said...

Dear Holland and Eden,

Please forgive me for long time not updating your information and the first thing I know when open the website is Eden's bad news. it shocks me so much and I nearly want to cry. Oh God, how beautiful and cute you are, my angels to see how both of you and your parents have tried so far.

Sorry for my poor English if my expression is not correct but this feeling is coming out straight from my heart. I wish I could be there to give you a hand or I could get married, had baby to share difficulty and experience which your Dad and Mom. Whatever happens, please keep go ahead, we far from Viet Nam always keep looking every step of your growing and you are always in our hearts ! Sweet kisses to you !
Van family.