Meet Cal...

Sorry...

2010-10-08T22:30:00.002-06:00

we are too lazy or busy (you choose) to keep up two blogs. If you want to see how Cal is doing visit steveandbrynn.blogspot

Bi-lateral???

2010-03-10T14:02:00.005-07:00

I guess this blog is due for an update. Cal is about 18 months now and he is still our chubby happy lil’ dude. He has finally figured out the walking thing and wobbles around the house like he owns the place. His religion is still the same: he worships food and his big sister.

Cal is doing incredibly well in both speech and sign. He probably has about 8-10 words:
Mom
Uh-oh
Bye-bye
Hi
Hot
More
Up
Ball
Whu for What
Animal Sounds (rooster, cow, dog, horse, duck)
Pa-pa (his Grandpa)
Dada is still ah-ah, but we are working with him.
And beyond that he says almost all of his sounds: ah, ooh, ew, buh, wha...he's doing really well for 5 months post activation.

Brynn gets every ounce of credit for Cal’s success. Audiologists, speech therapists, deaf mentors, PIP advisors and working with Cal – I don’t know how she does it, but she’s an incredible Mom.

We are at point where we are wondering about a 2nd implant. There seems to be a lot of opinions out there, but very little hard evidence for children. So we will go ahead and ask all of you. Is there anyone out there that has received, or had a child receive a bi-lateral implant? Would you recommend it? What differences have you seen? Please let us know – we’d love to hear from you. Thanks in advance!

Meet Cal's Voice...

2009-11-21T11:19:00.003-07:00

Cal loves his implant and loves his new voice. Every time his implant goes on it is like flipping on a voice switch - quiet Cal goes to noisy Cal. He is responding to pretty much all sound and is already on program 3 of his 3rd mapping. He is getting sick of working on his LING sounds, but so far he has said his mmm & aaah, and is so close to making an eee sound.

And although it sounds like his whole life is about his CI, it really is not. He is a typical little dude that destroys everything, climbs anything, and drives his sister nuts. He's a little stud and he knows it.

Cal's Activation

2009-10-21T11:54:00.008-06:00

Well we guessed right! Everyone asked us how we thought Cal would respond when he was first turned on, and we said "he'll probably do his nervous laugh." He was such a good sport at the appointment. It is a long and strenuous process for a 1yr old, but he did a great job! For the past two weeks, Cal has just been getting acquainted with his implant. Yesterday we went in again and they activated more electrodes and turned it up a level. Today at breakfast Londyn started talking to Cal, and he turned and looked at her! I think it is the first time he has actually heard her talk. It has been a whole new world of fun at our house these last couple of weeks, and we are so grateful for the genius doctors that came up with this miraculous technology.

Here are a few pics of his new skull candy!

Cal's Eventful Two Weeks

2009-09-06T11:03:00.000-06:00

Mr. Cal turned 1! He had a great party with family, ate some yummy cake, and got a whole bunch of fun presents! Since he turned one, our sweet, cuddly boy has turned into a complete maniac. Cal is definitely going to be a wild man like his daddy!

Cal's Surgery went extremely well. He was only in surgery for an hour and a half. They were able to place all of the electrodes in the cochlea without any complications. In fact, he was back to his normal self about 7 hours after the surgery. There were three other 1 year old babies that got implants that day, so Cal had a lot of fun playing with his new friends! Our little man is such a trooper, and we are so very proud of him!

Surgery Is On!

2009-09-01T14:17:00.002-06:00

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!

2009-08-26T15:59:00.000-06:00

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

2009-07-23T22:23:00.002-06:00

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

2009-06-23T12:12:00.006-06:00

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)

2009-06-01T16:14:00.005-06:00

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

2009-05-22T10:16:00.007-06:00

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...

2009-05-06T23:04:00.003-06:00

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

2009-03-10T11:40:00.002-06:00

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

2009-03-04T20:53:00.006-07:00

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

2009-02-23T10:51:00.000-07:00

“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.

Hearing Booth

2009-01-30T13:31:00.003-07:00

We did a hearing booth test for the first time this week, and it was a huge success. The process goes as follows:

Cal and I sit in a small booth with big speakers and a TV on our right and left side. I hold Cal on my lap as an audiologist sits in front of him and makes faces at him. As he is smiling and laughing, another audiologist behind the glass window sends sound through the speakers. In our case she said ba ba ba ba in the microphone. When Cal heard the sound, he stopped smiling and got an inquisitive look on his face. We kept repeating this process to see what kind of response we were getting each time. The audiologist explained that he was responding to sound at 70 decibels with his hearing aids on. This means that Cal would be able to hear a big dog barking when he wears his hearing aids. We were so excited about the results! It doesn't mean he won't get an implant. It means that he will respond better to an implant because he is receiving and recognizing sound right now. The more sound he is getting into his brain, the more successful he will be with implants. Way to go Cal!

An Answer

2009-01-11T20:01:00.003-07:00

This last week has been a big week for little Cal. The long awaited (and dreaded) MRI finally happened on Wednesday. And a few (very long) days later we got the results. Cal has all his little ear bits and pieces and appears to be a good candidate for cochlear implant surgery. Brynn and I are extremely excited about the news. By no means is this an easy road, but at least we know what road we are on, and that in itself is a tremendous relief.

So here is the basic run down. The cochlear implant will give Cal hearing capabilities. This does not mean that he will hear like you and I hear, but it does mean that Cal has a good chance of being able to hear sound, learn speech and be mainstreamed. Obviously we will take these steps as they come, but as parents we feel like the implant gives Cal options.

More than anything is just feels good to have a direction. For months we didn’t know if Cal could or couldn’t hear. We had no idea where we were or where we were going. And though we still don’t have exact answers to those questions, we do feel like for the first time since we found out about Cal’s deafness, we have been given something tangible.

And so starts Cal's journey towards a cochlear implant surgery.

RollerCoasters & Clichés

2008-12-17T12:58:00.006-07:00

There are good moments and bad moments; moments that literally break my heart, and moments that consume me with so much happiness, I cannot even hope to put it into words. This truth lies with every parent, perhaps slightly magnified when your child cannot hear.

Driving in the car, Cal crying in his car seat, and his 2 1/2 year old sister is singing him Twinkle, Twinkle Little Star, because she knows when she is upset, singing helps calm her. Cal continues to cry, because he cannot hear his big sister singing her little heart out. And though she talks and sings to him all the time, Cal has never heard his big sisters voice...heartbreaking.

Cal has the cutest little voice. He coos, he talks, he squeals...and the older he gets, the less he uses it. The doctors warned us of this. At 4 or 5 months old, because Cal cannot hear his own voice, he will not use it. So as we watch our little boy become more and more silent, he does this...complete happiness.

Roller coaster, ups and downs, highs and lows (plug cliché in here). So goes the journey that is parenting.

Cochlear Impant

2008-11-23T21:29:00.002-07:00

When we talk about the possibility of a cochlear implant for Cal, I do a really bad job of explaining how it all works. I found this little tutorial on youtube that does a much better job of explaining how the implant works than I do. This may a little soon since we have no idea if Cal can get this surgery or not, but hopefully it helps clarify a bit.

Cal got his Hearing Aids!

2008-11-13T16:24:00.003-07:00

So the little guy got his hearing aids! The hearing aids should not do anything for Cal, but the FDA requires that children wear hearing aids for 6 months before they are considered for cochlear implant surgery. So if it comes to that, we want to be ready. For the first time since this process began, it feels like we are moving forward. So even though the hearing aids won't allow Cal to hear, we are still really excited. (Not to mention, the little dude looks like a stud with his new skull candy.)

Help & Hearing Aids

2008-11-13T11:21:00.000-07:00

Cal has been an incredibility good kid. He is 2 months old now and huge. He is smiling ton; and not the mouth smile either, when Cal smiles his whole face smiles. He talks non-stop and loves his big sister. He's a cute little dude.
A few weeks ago, we went in for his second ABR (Auditory Brain Response) Hearing Test, and the results were the same. Cal's brain does not register sound at any level tested.

At that same appointment Cal was fitted for hearing aids. A mold was taken of his little ear so that hearing aids could be fitted to him. The hearing aids really shouldn't do much for Cal because his hearing loss is so severe, but he has to wear them for 6 months before they even consider cochlear implant surgery. So we are just taking the necessary steps if it comes to that. (One nice thing is that because the hearing aids are not a hearing solution for Cal, we are able to borrow them. That saves us about $3,000 to $4,000)

Last Friday we had someone from the PIP (Parent Infant Program) come to our home. This is someone assigned from our school district (it can also be from county, state, city, etc.) that helps answer questions and work with Cal. This program is absolutely amazing. It is so helpful to have someone come over once a week that walks us through decisions we will need to make, establishes goals for Cal, assesses his progress and teaches us parenting skills. She puts us in touch with members of the deaf community, support systems, schools, outreach programs; she is very own personal aid. Brynn and I are so grateful for this program. For the first time since we found out that Cal was deaf, we feel like we are establishing a support system.

Cal's Type of Hearing Loss

2008-11-13T11:19:00.000-07:00

Cal has profound hearing loss (lay mans terms: he is totally deaf). Hearing loss is typically broken up into mild, moderate, severe and profound. Mild to severe hearing loss is usually treated with the assistance of hearing aids. According to Cal’s tests, he does not register any hearing capabilities so hearing aids will most likely not allow Cal to hear. Cal also has no structural damage (meaning there is nothing wrong with the ear structure itself). Cal’s hearing loss is caused by one of two things: a total lack of nerve (very rare) or a problem with the hearing organ (cochlea). Because Cal’s deafness is nerve related he has what is called Nero Sensory Profound Hearing Loss.

What does that all mean? Well it means a few things. The first thing it means is that Cal needs an MRI. An MRI will determine if Cal is able to qualify for a cochlear implant. A cochlear implant is a rather invasive surgery that places electrodes into the hearing organ (cochlea) and transmits an electronic sound to the brain. Basically the ear is completely bypassed and sound travels from a receiver (worn on the ear) to the brain. A cochlear implant would give Cal hearing capabilities and allow him to learn speech. His hearing would be nowhere near normal, but it would allow him to hear.

If the MRI shows that Cal does not qualify for a cochlear implant, Cal will have no hearing capabilities. At this point Cal’s primary form of communication would be ASL.
They will allow Cal to receive an MRI at roughly 4 to 5 months of age. Until then, it is a bit of a waiting game. These are 2 very different roads for Cal, so for now we are just enjoying spending time with him.

The Aftershock...

2008-11-13T11:18:00.000-07:00

So I am going to be as honest as I can here. Our son is deaf. We know things could be worse, we know technology is amazing now days, we know you know someone who knows someone who is deaf and has a great life, we know that we will be able to handle it…and we know you are just trying to be supportive (and thank you for that)…but to us this was awful. Not awful in the sense that you love your child any less, but it is awful in the sense that I have no idea how to be a parent to a deaf child. I have no idea what questions to even start asking. Awful in the sense that my child may never hear his sister laugh, my favorite song, what his favorite animal sounds like, or his mom saying “I love you”. There are so many questions, so many unknowns, so many tests, so many roads…and here I sit just thinking to myself…”I feel helpless. I feel absolutely and utterly helpless.”

That was the first few weeks after we found out that Cal was deaf. Denial, anger, powerless and depression ran its vicious course. I won’t lie it was very, very hard. Tired eyes and damp pillows can vouch for that.

Then something funny happened. Cal started to smile. Our little boy started to coo. Cal’s little face would light up when I picked him up and suddenly our deaf son started to be just Cal. It was a subtle, yet crucial change for me. I didn’t have a deaf son. I had a son who happened to be deaf. This disability was not going to define my son. And that was my turning point.

The Beginning...

2008-11-13T11:17:00.001-07:00

Cal was born on Aug 26, 2008. He was born with absolutely no complications and the actual labor lasted roughly 2 minutes. He passed all his tests with flying colors except for one. Cal failed his first hearing screening. “Should we be worried?” we asked the nurses. “Absolutely not,” the nurses assured us. “99 times out of 100 it is just fluid in his ears. “Come back in 3 weeks and we will re-test him…”

3 weeks later we took Cal back to the hospital, and again Cal failed his hearing screening. At that point the hospital told us that we needed to go see an ENT (Ear, Nose & Throat) Doctor and see what was up.

This is the first point in which Brynn and I started to worry. We scrutinized Cal to see if he would startle to shouts, bangs or his 2-½ year old sisters screaming tantrums. But c’mon, he was 3 weeks old. We had no idea what to look for. The kid slept 22 hours out of the day. Permanent hearing loss didn’t even cross our minds. We had no family history, the delivery was textbook; worse case scenario was that Cal was one of those kids that would fight ear infections his whole childhood and would need tubes in his ears.

A few weeks later we headed to Primary Children’s to see the ENT. The doctor evaluated Cal and told us that he saw no sign of fluid and recommended that we see an Audiologist for an ABR (Auditory Brain Response) Test. This test measures the reaction of the brain to sounds. Off to another doctor…

At roughly the age of 6 weeks Cal went to see and Audiologist to determine if he had any type of permanent hearing loss. Our Audiologist was great. She sat us down, told us that this test would take up to 2 hours because the will test will make different sounds, pitches and decibels to determine if, or just how much hearing loss Cal had. She would walk us through the whole process. We settled in for a long day…After about 10 minutes of testing she slowly unhooked all of the equipment from Cal, looked us in the eyes and said, “It’s never easy to tell parents this, but…”

Honestly after that I have no idea what was said. Brynn and I just nodded our heads, thanked her for her time and walked outside. That is the day that we found out that Calan had profound hearing loss. That is the day we found out that our son was completely deaf.