Surgery Is On!

After countless…

phone calls
faxes
managers
forms
and waiting, our insurance finally approved Cal’s cochlear implant. That means that this Friday is a go! The long wait is over, Cal will be implanted by the end of the week.

Excitement
worry
happy
sad
concern
and relieve setting in. We will be sure to let you know how it goes.

Happy Birthday Cal!

365 days ago that Brynn and I were in the hospital holding our tiny little infant. And here we are, one year later, holding a fat little man. And that fat little man has brought us more happiness then we ever thought possible. Calan is the type of kid that smiles for anybody, laughs for no reason, waves to passing airplanes and burrows into your neck when he’s tired. I’m lucky to be his dad. Happy Birthday Cal.

Dad's Sentimental Rant

By no means do I consider myself an expert in all things deaf, but what I have learned in the past 8-½ months is astounding. As a parent you read books, you learn audiology results, you pour over cochlear implant studies, you take ASL classes, you meet weekly with PIP, you immerse yourself in the Deaf culture; whatever you can do, you do. You figure the more you learn, the less lost you will feel.

But lately I find myself grateful that I have been able to learn so much. I’m grateful that I am learning another language. I’m grateful that I have discovered a culture I knew nothing about. I’m grateful for friendships made. I’m grateful my son is deaf. I know this post is ridiculously cheezy (and I am sorry for that), but for parents who are maybe just finding out that their child is deaf. It gets better. It gets much better. In fact, it becomes pretty awesome. Believe me, watching your little 10-month-old sign Mommy & Daddy is about the best thing in the world.

I’m not saying that there are not trials and heartbreaks. I’m not saying it’s easy or painless. I’m just saying there are good parts too. And the older they get, happiness and acceptance start to take over all of the worry and sadness. Like I said, it gets better...much better.

Date Set

The date is set, the okay has been given…we are officially a go. Cal is scheduled for his cochlear implant surgery on Sept. 4, 2009. So now that the date is set and most things have been squared away I’m starting to freak out a bit. Part of me wants the day to never come and the other part of me says it can’t come soon enough. Being a parent is hard enough without having to make multiple absolute life altering decisions for my kid well before he even gets to blow out his first candle. So goes the life.

Cal’s still a ridiculously tempting piece of chunky. Every time we leave the house people can’t help but kiss his fat cheeks. Here are a few pics we had done recently:

Cal's first words (signed of course)

Yay for Cal! He said his first words! Just like a hearing kid who says "Mama" for the first time, a deaf child will sign it. I know, I know, lots of kids sign at nine months, but for some reason it is really exciting to see your child sign when it is his only form of communication. Cal's first sign was "dada." Can you believe that! After all the work I have done with him to sign Mommy, his first word was daddy! Londyn did the same thing. What is that all about? The next signs to follow daddy were mommy, more, and ball. Cal also understands the sign for light and airplane. I figure that is the only benefit of living in the direct path to the airport. We get a gazillion planes flying over our house every day, so Cal has had plenty of opportunities to learn that sign!

Here is a video to demonstrate his skills. Of course Steve put him through torture in order to capture it on film, but what do ya do?

Support for Parents of Deaf Children

I just wanted to say thank you to all of the people who gave us input on which CI they chose. It was extremely helpful. As you all know it is a huge decision, and it is a decision that will impact your child for the rest of his or her life. We just want to do what is best for our son! Thank you for all of your support.

Throughout this new journey with Cal, my husband and I have learned that there is a huge support group available to any parent who is going through these same tough decisions. If you are first learning that your child is deaf, get in contact with your local school for the Deaf and Blind. You will find several resources to get you on your way. The most important of those resources is the Parent Infant Program (PIP). Someone will come to your house once a week to teach you how to parent your deaf child. It has been the biggest blessing in our life. Our PIP advisor is Nicole Pilling. She is unbelievable! She has taught us so many great things to help Cal learn to communicate with us. We feel extremely lucky to have Nicole play such an important role in Cal's life.

The last thing I want to tell all parents of deaf children is that you are the only person that can make the best decision for your child. We have learned along the way that people are very passionate about the decisions they have made for their own child. This is fantastic. You should be passionate about the decions you are making, or else they wouldn't be the right decision. I have learned that every child has their own specific needs, and something that is perfect and great for one child may not be so perfect and great for your child. Do what is in your heart and in your gut. You are the only one who can decide what will work for you and your child. Don't let people push you into making certain decisions. Take all the advice you can get, and use what works best for you!

Could use a little help here...

Cal is growing right up. He is a little stud who smiles at just about anything. He is starting to understand some sign and even seems interested in signing himself. He mimics really well and is always using his hands. And contrary to what the doctors told us, he is using his voice a ton.

But more about that later. This blog is for advice. We are still planning on the cochlear implant this summer and have researched both the Advanced Bionics and the Cochlear. After going to seminars, reading online and talking to both companies, I am leaning, but still not 100% sold on one company over the other.

So, to parents or people that have had an implant, I am looking for some advice here. (And I don't want the, "They're both great!" answers. I want to know why you chose the company you did and if you are happy with the results. Please help!

Dealing with a Child's Hearing Loss

I was reading an article in the AG Bell's winter newsletter, and I wanted to share the closing paragraph with you. I think this is such great advice for any parent who learns that their child is deaf. I am just going to quote it. The author of the article is Heather Frost.

"I know hearing loss is tough, especially as a parent of a toddler who is deaf. Try not to grieve too long about what has happened. You as a parent could not have prevented it from happening. Be excited to take on the challenge to be your child's best advocate!"

I think this is probably the best advice I have heard. Good luck to all of you parents who are just learning about your child's hearing loss. There are several people out there for you to talk to and get advice from. Take every opportunity to learn about ways of helping your child succeed.

Cal's Progress

We did another Sound Booth test with hearing aids this week, and Cal responded to 60db on his left ear. We are really excited! His left ear seems to be doing much better than his right ear. We think we may have had a response in the right, but we will continue testing. I thought I would show you some of Cal's progress. I know it doesn't seem like a lot, but this is a big deal in our family! Oh ya, and don't mind Londyn walking by in her underwear, we are real classy in the Perkins' home!

Insurance

“No, your insurance plan does not cover cochlear implant surgery.” Those are the words we heard a few days after Cal’s MRI. Needless to say that sent us into a frenzy of looking into supplemental insurance, advocacies, anything that would help us in getting Cal’s CI covered. One of the advocacies recommended I request a full disclosure of benefits from my insurance. As I read over these it said nothing about cochlear implants, in fact the only thing it said was, “Do not cover hearing aids or similar devices.” Similar devices? If that was their way out they were going to have to better than that. So I called back up the insurance (immediately asked to talk to a manager or specialist) and explained our situation. After a game of 20 questions, we got our $80,000 answer...we are covered! They will only cover one implant, but for now we will take it. It is such a relief to not have to worry about this along with every thing else. I doubt this will be my first battle with the Insurance companies...but this victory was a big one.