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!