Our visit to Santa!

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We have a tradition of visiting Santa at Heritage Farms in Hudson, IA.

Although it's nearly a two hour drive for us, the kids have found a lot of magic in it every year! This year my Mom was able to go with us and we really had a great time! Valarie is always the most excited to see the horses, Santa is exciting too, but the horses are her thing! There is a barn with a little pin set up in the middle for the kids to climb in and pet various animals. This year there were piglets, bunnies, sheep, a pony, and kittens. They also had a few different dogs in the barn that were very friendly. Evan was intrigued by the cage with the chickens! He was very vocal about them! We also had the opportunity to ride horses, as I said Valarie's FAVORITE thing! She wanted to ride the Clydesdale, but I encouraged her to ride the much smaller one! It is always a challenge to persuade her to get down! Riding in the sleigh is always so fun for the kids! They have beautiful horses pulling the sleighs through the field and through the trees to the cabin to see Santa! On the way back this year Valarie was brave and rode on a sled pulled behind the sleigh! She was so very proud of herself! Evan was very observant the entire time, a little unsure of the entire thing, but he took it all in! The visit with Santa was scary for Evan! He is at the age that strangers are not so great and one with a red suit and beard is way off the stranger danger metor! So of course he cried and we took a tearful picture and then he was fine. Grandma Wendy took him by Santa later and he did actually touch his beard and check him out as long as Grandma was holding him. Then it was out to check out the snow! He was not a snow lover either! He tolerated it long enough for a quick picture yet again and then back into mommy's arms! The girls loved every minute of everything! The sleds on the snow hills were a blast and having Grandma with was a treat! The kids also loved playing on the swings in the hay loft! As we finished up the trip we were surprised to find presents in each car seat for the kids when we returned! Each one of the girls got a new movie and Evan got a new little tractor. How did Santa know what movies they wanted and that the tractor have to be red at our house they asked...well Santa just knows these things! So the tractor brought the first smile out of Evan for the trip and we headed home. There were a lot of opportunities for listening and learning! Animals sounds, sleigh bells, and of course Santa's "HO, HO, HO!" Christmas is so much fun!

We are not alone...Today show showcases a CI Family

This is a great story that showcases a great example of the miracle of cochlear implants. This mom of these three beautiful children is a member of a fb group I am a member of. It's so exciting to see that these wonderful people I have reached out to and read posts to and about are actual people that I can learn so much from. Our journey has just begun and it's so reassuring to know that we are not alone, there are so many families going through the same thing that we are on a daily basis! The CI kiddos this showcases have a genetic loss, Evan's cause is undermined and probably will remain that way. Occasionally hearing loss just happens, but it's such a small part of who he is and who he will become that I can't imagine him any other way! Take the time to check out this wonderful story!

Mapping went great...now working on more speech!

So our last mapping appointment went wonderfully! Evan was a trooper as normal and responded well to sound as they set each processor. For most of the session he played and hummed along with the beeps, but by the end, he had had ENOUGH! It was nap time and so the last few minutes he really could have cared less what we were doing! For a 1 yr old I am amazed at how well he really does do! It actually worked out great, because eletrophisiology was next, perfect nap time~ he slept through the entire appt. and then we were done! Unfortunantely his speech appointment was cancelled at the last minute, so hopefully it will get rescheduled for next time!

After some research and deliberation, we decided to get Evan referred for some additional speech services. For you parents who have been through this already, you know how hard this can be!

We are not located near a school for the Deaf/Hard of Hearing, but we do have great Area Education Resources and distance learning courses available through various schools. So I have signed up for the John Tracy School Distance Learning program and also have started our path towards additional support services through our local outpatient hospital services. Evan's TOD is amazing and will continue to work with him weekly...His AEA speech pathologist is also good with him and has been able to commit to twice a month! We will take as much as we can get, but after some digging and suggestions from his CI team, we had his evaluation for weekly speech as outpatient service in Mason City as well. Although it's a jaunt, it's so worth it! His speech therapist there is Wendy and seemed very excited to work with him. She supported the importance of early intervention and early speech development! I am excited to work with her and to watch Evan as he continues to progress!

I know as parents, Rich and I are his primary educators, but I am not trained to do his therapy! I will do all of our homework, play, and be the best advocate I can be! I vow to be the best mommy I can and seek out as many resources that I can to benefit him! I am really eager to continue this journey, and watch my Deaf baby learn to listen and eventually Speak!

We do the best we can...

So it's been a tough week, not for Evan, but for Rich & I. We lost a long time friend and classmate at the hand of her husband. Terese was a strong, smart, and beautiful woman. She was motivated by the love for her young son to protect him and this cost her life. She will be remembered for many things, but to me she was a dear friend. I hope that someday this tragic event will help someone somewhere...I know Levi, her son, is safe as is his momma. She is safe in the arms of Jesus and he in the love of family. Her memories will live on through him.

We do the best we can as parents and I pray my children will be as wonderful of a person as she was. I have included a short video from a local news station, please disable to music to the rt. before watching! More news on Evan's progress is coming! We had a great mapping session yesterday and i will post later with details!

Not so quiet anymore!

The weather had been beautiful for the last few days so the kids and I have been trying to spend a lot of time enjoying it! We love to go for walks and I think Evan is enjoying all of the sounds that go along with these walks now too. We watched an old building in our community, Memorial Building, being torn down and the trucks make a lot of great sounds. He was mesmorized by them. It so great to actually see his little eyes in amazement to new sounds!

So super mom thought it would be a good idea to swing through the library as we went by to check out some new books too. We are working on the mmm sounds and the ahhh sounds this week so we went hunting for some books to help. Well my quiet little boy isn't so quiet anymore. The librarians thought it was so great to hear him babbling, but seriously why right now! Earlier in the day working with his TOD he was seriously SILENT for most of the hour and now he won't shhhh! So we found our books, checked out, and went on our way! It's great to hear all sounds and truely a blessing, but there are times that I wonder really why right this second do you decide to talk! So when we are focusing on making sound at supper time, I really hope to hear him say, mmmmm, because I know he can!

Silence to Sound!

Evan has been in two local papers and the local News this past week. Here are the links to each.

Be sure to disable the music on the ipod on the right hand side of the blog before watching the video!

Globe Gazzette article, also in the Britt paper too! Coming of age, Hearing age!

KIMT video click play in the rt. corner on the screen to watch the Silence to Sound and article!

Evan's continued progress has been very encouraging! He likes to make his trucks say BRRRRR...it comes out more as a hummmmm, but it counts! Today working with his Teacher for the Deaf/Hard of Hearing, Shandra, he made some VERY GOOD SOUNDS! One activities they did together today...she had a box full of film canisters, each one had something different in it, making a different sound when you shake it. After a couple of ques from Shandra he would shake them and make the "shake, shake, shake," sound. When he vocalizes shake, shake, shake he does stop and pause in between each vocalization! This means he is hearing each word and that is GREAT! One of the canisters had a tiny bus in it, he really liked this! Shandra had it make a Bbbbrrrrrrr sound and then a beep, beep! He mimicked it! Yes he did! He made a mmmmmmmmm, and then a mm, mm, this is really very good! One more thing they did today...he despised his socks this morning for some reason and constantly took them off. She made it into a listening game, of course she did, she is so great! She pulled, and tugged and made a moaning or tugging sound whatever you want to call it and guess what! Evan made the sound trying to take them off too! I know some of you know how encouraging this really is and for those of you who done....IT'S AWESOME! Now you know! This is just today, we see exciting things EVERY DAY! I can't tell you how exciting it is to watch my Deaf baby hear sounds and actually verbalize in resposnse to them! CI's are so amazing!

Losses & Gains...

Grandma Sandy meeting Evan for the first time!

We had an unexpected loss in our family in the very recent past. The loss of my mother-in-law was quite a shock and will continue to be for some time to come. Again and again I am reminded what a great support group of family and friends that we are blessed with and I was reminded throughout the week leading up to her funeral and in the days following.

Evan was lucky to have had many days playing with her and his sisters this summer. Grandma Sandy's passion was her grandchildren and I will continue to share this with them as they grow.
It has been difficult explaining to the girls exactly what death and heaven are all about. Seriously it's hard for adults to wrap their minds around, but the words of the little ones sometimes melts my heart. Alayna has reminded me that she will see Grandma again someday and it brings tears to my eyes even now. She is so right...there are gains to be found in the losses we have. We have gained a new guardian angel and she lives in our hearts. That is one thing we have talked about a lot with the girls. Even though we can't see her in heaven she is always with us in our hearts. I find comfort in my belief of heaven...I can only imagine what it's like. So we will remember the good times and the bad. The losses and the gains and support her memory in the minds of our children....they were her passion and continue to be....

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....