ACTIVATION

Cakes made by my sister-in-law for Evan's Surgeon and Audiologists...the edible gift tags read..."thank you for the gift of hearing!"

Evan & his rock star Audiologists after activation!

Daddy, Mommy & Evan

The infamous turtle before the big attack!

A close up look at his "super ear"

All done with activation, very tired & serious!

A full tummy & happier...at electrophysiology testing

Yes, I am two weeks behind, but it's been a busy two weeks! I will start @ activation...

The morning of activation was surreal! We had been awaiting the day since we had found out that Evan was Deaf! It was hard to believe that is was really going to happen! We had the girls geared up the day before, as we left them home with family so they wouldn't miss school. They had their supper man, AKA super ears, t-shirts on back at home to make the day special for them too. Rich, Evan, and I all were rather stylish in ours too. We were so excited that our little super man would soon have his super ear powers!

Activation was rather laid back and Evan seemed to sail through the first ear activation. The first thing I said to him was of course...."Evan, Mommy loves you...!" Thinking about it now brings tears to my eyes. Somehow that moment I didn't cry, I think I was so caught up in the moment and not actually aware of all the emotions I had running through me! Rich had the camera running trying to catch every moment. He had a few responses such as looking up at his audiologist, Rich, or I when different sounds were sent through the processor. He also had a few responses to voices in the room, as well. (Right now the voices probably aren't distinguishable, but will become so over time) Any change in behavior is considered a response, such as stopping when playing with a toy, looking up at someone in the room, crying, or sometimes squinting. He did amazing and DIDN'T pull the coil off at all during the right ear activation! He was such a pro!

On to the left ear...He was not so impressed now! Granted he had just been attacked my a toy turtle! He was pulling on the turtle his audi had in her hands and it bumped his little head, in not such a happy response he hit himself with it AGAIN in the head! This was not such a highlight of his day! I took him out of the seat and held him for the remainder of the activation. When it was turned on he again began to cry. When it was turned off, he stopped. Although we don't like to see our little ones cry...this is a great thing! It means it's working! His audi set the processors with 3 programs each and we were to slowly turn them up as Evan was tolerating the sounds over the next two weeks. His sound window is limited to begin with and with each appt. he will be turned up and his window will open a little more each time.

We had a quick lunch break, Evan was very tired. We were lucky enough to meet some wonderful friends at the hospital cafeteria for lunch. It was so great to share the exciting day with them! The fun of getting them to stay on his little ears began, as they were constantly falling off during lunch! We even tried a set of retention molds to help, his ears are just too tiny. After a quick visit with friends, we were on to electrophysiology ...this is testing his brain response to each electrode I do believe : ) It lasted about an hour, A coil is put on Evan and he is free to eat, sleep, watch TV, play, or whatever during the testing. I thought for sure he would sleep, but he wanted to play instead! Rich and I went through all of our new goodies that comes along with the CI kits. Tons of stuff with bilateral activation! The time flew by and our little trooper crashed as soon as he was buckled into his car seat.

We finished the big day with hearing his sisters for the first time! We picked them up and had supper with family. The girls were excited to see his new equipment and wanted to talk, talk, talk to him and squeeze him and love him! He was a little overwhelmed, but hung in there. I will post again soon and tell you all about my solutions to keeping the processors off his ears! ACTIVATION DAY was AMAZING!

Evan & the Paparazzi

Our local news station is following Evan's journey from silence to sound. They did a story on him before surgery, an update yesterday and will air his activation next week. Here are the links to the KIMT website to watch and read what they have done so far...
Initial story...video
Follow up...article

I will post when his autograph signing will begin...we are working on it!

As many of you know when I get my mind set on something, I make sure as many people as possible know about it. I really think hearing loss awareness is important including CI awareness. All the research I have done has been amazing and I continue to be awed daily. Now I can't be quoted, but I read that something like 90% of infants born deaf every year are born to hearing parents like Rich & I. WOW! I also read that out of all the people infants-adults in the US that actually qualify for cochlear implants...less than 50% actually get them. Some chose not to, some don't truly understand how they work, and some can't afford it. Hearing care is an optional coverage by insurance companies! OPTIONAL! So if you are Deaf, it's not considered medically necessary for insurance to cover hearing aids, and if you are Deaf they won't help you anyway and they DON'T have to cover cochlear implants either. No, it isn't cheap and either is the care needed after surgery. A great deal of appts. follow in the years after implants to program(map) them with and audiologist and with speech and language pathologists. Many parents have to fight to get coverage for their kids, it just blows my mind.

I am not into politics, but I think sharing Evan's story might make people realize that it is necessary! HELLO! I can't wait to see the progress he will make, that wouldn't be possible without some form of hearing. I know he will always be deaf, but with the implant he will hopefully be able to communicate and verbalize. Now seriously look at this little guy and tell him he doesn't need to hear. I hope his story helps someone! I might never know it, but I think sharing as much as possible will help get the word out there!

So as far as the paparazzi goes, he's pretty photogenic and we will work on the autographs. I hope to share his progress with anyone who will listen. And if you don't have the ability to listen yet, I am working on signing :)

Surgery...he has his ears!

Surgery was yesterday and Evan did great! He was a little trooper. My mom came with us to Iowa City, an extra set of hands is always great. We had to be at the hospital at 5:45. Evan was wide awake and didn't really mind getting his vitals done and getting ready for surgery. I was all geared up to go to the operating room with him until he fell asleep, but he was sleeping before we went back, so he really had no idea it was coming! Surgery took about 4.5 hours, shorter than they had us prepared for! Nana Lori also came to keep us company during surgery. It was so nice to have her there! Dr. Hansen said it went perfectly! The electrodes tested well and there weren't any difficulties placing the implants.

Coming off the anesthesia wasn't too bad. He of course was not a happy little guy for awhile, I don't blame him! He slept on and off most of the afternoon and had an upset tummy in the evening. We went for a short walk and it was on our little stroll that he creamed me...bad! His poor tummy was really upset and throat was sore from the breathing tube he had during surgery. His congestion from that has cleared up and with a little medicine to calm his tummy he is doing great today. Kelsey was our nurse in the evening and she was so sweet! I got pictures of everyone, gotta love the scrapbooker in me! This morning we saw a familiar face, Holly Winter(maiden name:) from our hometown was our nurse. It is truly a small world and it was nice to have her as Evan's nurse today.

He is wanting the bandage off so we are trying to keep his little hands busy with other things. His balance is still a little wonky so he is spending time in the exisaucer, sitting and crawling is still a bit of a challenge. By tomorrow that should be a ton better. We are so glad to be home and can't believe it's done! Yea, one step closer to hearing!

Thank you to everyone for your extra thoughts & prayers!

Many Friends and Family have had questions about what an implant is, why he needs one, and how does it work? I will do my best to explain...

Normal hearing is about 10-20 decibels. When Evan was tested he was found to have Profound loss bilaterally(both ears). Hearing aids amplify or make sounds louder. If you have a a hearing loss amplifying sounds can help you hear them....the inner parts of the hear work and are getting the messages to the brain if it's loud enough. When the loss is severe to profound and or there is a problem with the cochlea itself, simply making things louder doesn't help.

The cochlea is the sea shell shaped bone behind the ear. It is filled with fluid and is lined with tiny hairs. When the sound enters, it vibrates and stimulated the hearing(auditory) nerve. The little hairs in Evan's ears may not be there, there may not be enough, they may be flat, we will probably never know why he is deaf. The implant is placed under the skin on the side of his head, the coil on the wire will be placed into the cochlea. Check out the picture above to see the implant size next to the nickel. You can also see in the diagram where it sits when it's implanted. The "coil" consists of electrodes that will send electrical pulses to the auditory nerve directly. Those cute little ears will not have to work, the implant will do it for him!

He will wear an external processor behind his ear that will pick up the sounds through a small microphone on the processor. the sound is sent to the external coil into the implant where the pulses will be, over time, read by the brain as sounds. A small magnet is in the internal implant and a small magnet is in the external coil. The two will twin up and the coil will magically stick to his head thanks to the magnets. The picture above also shows the processor on and off.It's only when this is on that he will be able to "hear."

Evan will always be deaf, but when he is wearing his processor, he will be able to hear us. AMAZING!

After surgery it won't be until September 3rd that he is activated. This simply means turned on! It's then that he will get the external processor and hear us for the first sounds!

I hope this answers some questions and helps!

Hidden Blessings

The journey we started with Evan has brought with it hidden treasures... the opportunity to meet amazing families and individuals who have been touched by silence. I got a phone call last night from someone who's little girl is following right behind us in their journey. It's so reassuring to be reminded that we aren't alone and that this is not a horrible thing! Right away when we found out about Evan's hearing loss we got a lot of apologies..."I'm sorry," is what you say about things like this. Well I'm not sorry anymore. Yes it is unfortunate, but it's the way God made him and guess what... we have already begun to find Joy in this! Not only Joy in the amazing little boy he already is, but Joy in the journey itself! Through the journey we have already made new friends in cyber world and locally. I am uncovering hidden blessing each day on this journey and am thankful. I can't wait to see where this will take us and look forward to meeting many more people in hopes that we can help each other and find joy in our children's silence!

Here is Evan getting his 4th ABR. This one was conducted in Mason City and Grandma Wendy went with us. He wasn't sedated so we had to work hard to keep him sleeping. You can see Grandma Wendy rubbing his head, he loves this! This is one of the few pictures of him with a pacifier as he isn't such a fan of them, but it worked today! The results comfirmed that his loss is more than severe...it is profound bilaterally. First step: Hearing Aids.

Tick Tock

It's only a few weeks until sugery and I am very excited! It doesn't seem like 10 months ago that we learned Evan couldn't hear us! August 7th will be here soon and then it will be a long wait to activation on Sept. 3rd. So as the clock ticks, I have time to enjoy my little guy without his super ears. It's fun to watch his amazement with visual things...last weekend at a wedding he loved the bubble machine at the dance and watching his face light up watching his sisters is so great to watch! I can only imagine the progress he will make when he is able to hear thier voices too! So Tick tock....