Blog Friends

I'm thankful that November has brought so many of our Internet friends to our hometown!

Drew and Lily got to meet up a week ago, their first reunion since attending the Moog Summer Workshop together. They both have grown so much in 3 1/2 short months, both in size, but most recognizably in language! Lily is a talking machine!

And, Drew got to meet Aiden for the very first time! Aiden was so cute, as he kept pointing to Drew's ears. He was so excited that Drew has ears just like him. I think they are friends for life!

Blogging Fun in St. Louis

We've returned from our annual family vacation, which this year included a trip to The Moog Center for Deaf Education. I'll share information from the wonderful courses and seminars we attended throughout the four day conference in future posts. I would strongly encourage those readers with young children with hearing loss to attend the Summer Parent Workshop. It is an excellent educational opportunity as well as a wonderful way to meet other parents. (And as a bonus, your child will receive four hours of therapy throughout the seminar! For $150, it's worth it just for that!)

Our first night in St. Louis we were able to meet Elizabeth from Deaf Village and co-author of Cochlear Implant Online. Elizabeth is currently working on her graduate studies in oral deaf education and certainly has a world of possibility in front of her. The way she interacted with Drew was amazing, and Drew's Dad and I quickly began the recruitment process, trying to lure her to our area of the country.

Elizabeth, it was wonderful meeting you!

Anyone...

Heading to St. Louis?

If you are, please let us know. We are looking forward to meeting many internet friends!

Meeting Lily

We had an opportunity to meet sweet little Lily last week. She was diagnosed with profound hearing loss shortly after birth, and like Drew, it is a result of Connexin 26. We enjoyed talking with Lily's parents, and hope that we were able to lend support during this time.

Drew enjoyed meeting "baby Lily." And, as his typical self, he enjoyed playing basketball for Lily's parents, showed off his clear understanding of time outs (as he was showing how he can stand on the table) and, as he ate his snack, showed just what a big mess he can make. I hope that Drew showed Lily's parents just how normal life really is for a family with a baby with cochlear implants.

Blog Call

So, it seems that I have gotten a bit behind in keeping my Blog Roll up-to-date. I know of many families that have left comments and have blogs, but I have failed to list you in the Blog Roll on the right of the screen.

Please take a moment to look and see if your blog is listed. If not, and you would like to be, please leave me a comment and I will add you ASAP!

New Friends

I've been emailing with a Mom from the east coast of the United States for several months now. Her son Ben was born in January with profound hearing loss. They are just beginning their cochlear implant candidacy. Through the wonderful world of the Internet, she was able to find Drew's blog, and we have talked at length about our path to hearing for Drew. She has decided to start a blog for Ben, and one of her first posts reminded me of one of the reasons why we wanted to start a blog for Drew as soon as we learned of his hearing loss. So to Ben's Big Family, we are so happy to have "met" you and so glad that we can help. You're at the beginning of an amazing road for your little boy!

Also, when Always Gone Dad left a comment on one of my recent posts, I was able to find Amelia's Journey. Amelia was just activated last week, and her dad just posted her activation video. Very exciting!

And, you'll want to check out six year old Brianna's story! She is waiting her activation in under one week! We've been reading his blog for awhile now, but Christian is scheduled for activation on May 27th!

I'm so glad that the Internet has been able to bring us all together. I know that Drew's Dad and I were really inspired by several little ones, as we went through the candidacy process for Drew's cochlear implants. I'm glad that we are now able to help others in the same way that those who have gone before us were able to help Drew and our family.

Bilateral Cochlear Implants: Updates and Controversies Conference

Meet Drew's friend Jonah.

Jonah is quite famous in the cochlear implant world in Columbus, Ohio. He's been featured on the local news and in ad campaigns for Nationwide Children's Hospital. That's partly because he has been so successful being implanted with simultaneous, bilateral cochlear implants at a young age, but it's also got to be because he's so cute too (don't you agree?).

Drew and his sister got to go to Jonah's home for his birthday party, and we all had a great time. Drew got him a book featuring dinosaurs that he can practice speaking with. We hope he likes it!

This postcard was sent promoting the "Bilateral Cochlear Implants: Updates and Controversies Conference" which will be held May 22, 2008 in Columbus. The featured speaker is Blake Papsin, MD, who is the program director of the Cochlear Implant Program in Toronto, Canada. Sounds interesting.

Monday is a BIG Day!

Monday is a big day in the lives of many of our CI friends. Landon and Kauan are having simultaneous cochlear implant surgery. Both boys are one year old. In fact, Drew and Landon both celebrated birthdays this week!

Also on Monday, Erin Toes is having her sequential bilateral cochlear implant surgery. She turned two in August.

We would appreciate it if you would say a little prayer for our Internet friends and their family as they go through surgery.

CI Cookout

We attended the annual Cochlear Implant Cookout held by Children's Hospital yesterday. It was a great opportunity to meet other children with cochlear implants and their families. Drew and his sister had a great time despite the very hot weather. Drew's Dad and I had fun talking with parents, both ones we knew prior to the cookout and new ones we met yesterday. We also had an opportunity to see Drew's ENT, the first time since his activation.

Drew with his cochlear implant surgeon Dr. (a.k.a. chef) Richard Kang at the cookout.

I met a mother of a baby recently diagnosed with profound hearing loss. Her story sounds very similar to ours and I look forward to having lunch with her in the coming weeks. I have developed such wonderful relationships with so many other mothers of children with hearing loss. We all have an immediate connection that is very difficult to explain, but these parents understand what it is like to have a child with hearing loss (much like the connection I have with my Internet friends, too!).

I met the mother of a teenager who received her cochlear implant when she was three years old. At the time her child was born there was a mandate by the FDA that the child try hearing aids for two years before a cochlear implant be considered! I can not imagine having Drew wear hearing aids for two years. He was getting no benefit from them and I was frustrated that he had to wear them for eight months. The great news is that the teen is doing amazing with her implant. She participated in the conversation we were having openly and her speech was very good. She is a true CI success story and an inspiration for parents like me just beginning this journey.

It was a very nice day and I am glad that we were able to attend. It will be nice to see these families yearly and see how well the kids are doing with their cochlear implants.

Cochlear Implant Discussion Groups and Listservs

If you are asking yourself any of the following questions, visiting the link below should help you find some answers.

1) Where can I find out more information about cochlear implants and hearing loss?
2) What are some good cochlear implant, deafness and hard-of-hearing discussion groups?
3) Are there any cochlear implant listservs?
4) What is it like to be a parent to a deaf child with a cochlear implant?
5) What is the best education style for my deaf child?

Visit Cochlear's Discussion Group Page to help you determine the answers.

Also helpful is Boston Scientific's "Bionic Ear Journey Resouces" Page. There you will find a downloadable "Hearing Resources Guide".

Implant Failure

Through this journey there have been many surprises, and there will be many more in the days, months and years to come. One thing I have been most surprised about is the network of parents of children with cochlear implants I have found through the Internet. These parents have been a great source of information and, through their children, inspiration for me.

Mom-to-toes, Heather, Shiloh, Kristen, just to name a few. So to them and others like them, I am thankful. Thankful that they are willing to share their children's stories with Mom's like me. I don't know if they realize how much I rely on their stories in my own journey with Drew.

In our journey with Drew there are going to be times where we experience a set-back. I am thankful that I have such a wonderful network of parents to lean on in every situation. I recently learned that Jack, one little CI boy from Illinois, had a device failure of his Advanced Bionics implant. He was implanted three years ago. Please keep him and his family in your thoughts and prayers as they go through this difficult time of an ex-implant and re-implant.