Search

Monday, December 31

Mama Had a Baby and His Ears Popped Off!

The list of things that I thought I would never say just got longer.

I took the kids to The Center of Science and Industry for the first time today. We had a great time playing in the Bob the Builder and Water exhibits, eating lunch and taking in an electric light show. I think we will be frequenting COSI a lot over the coming years.


We happened to be walking by an exhibit hall just as a show was beginning. It was a show all about holiday lights, which I new my daughter would enjoy. We went in, took our seats in the front row and the show immediately began.

"Ladies and Gentlemen, Boys and Girls, Welcome to the Holiday Lights Extravaganza. This is the biggest and loudest show COSI has to offer!"

Oh no. The loudest show COSI has to offer? I knew a loud show would not be good for Drew. What would I do if the loud noises scared him?

The scientist went on to explain that she would tell us to cover our ears before she made any of the loud, exploding noises. I decided that I would just pop off Drew's coils when she indicated to the audience to cover their ears. I then made sure my daughter knew how to cover her ears, so she would not be scared while I was tending to Drew.

The show was very fun, and neither child was scared of the loud sounds, mainly because Drew never heard them. Problem avoided. We watched Rudy the Reindeer ride a bike to power Christmas Lights, saw Snowmen light up with the help of liquid nitrogen and learned why Ralphie's tounge stuck to the pole in A Christmas Story. It was fun.

On the way out, the scientist commented how well my two little ones did with the loud noises. Without thinking, I looked at her and said, "Oh, it was easy. She's good at covering her ears, and I just popped his ears off so he wouldn't hear the noises."

As I walked away, I laughed. "Popped his ears off." Too funny. I wonder what she was thinking.

Saturday, December 29

Six Months?

We've all been sick with the flu. The nasty little bug caught Drew and he has spread it to the entire - ENTIRE - family, including the Grandparents, Aunts, Uncles and Cousins that spent Christmas with us. I'm not sure if anyone will come back next year! In the midst of the sickness, Drew's six month hearing anniversary escaped me. Has it really been six months? Some days it seems just like yesterday that he was activated, in others it seems like he has always been able to hear, as the most early days of Drew's life are sadly fading from my memory.

In six months Drew has changed tremendously; physically, socially and most obviously in his communication.
  • Drew can identify all of the ling sounds at close range, three feet and six feet. He can repeat /ah/, /e/, /m/, /s/, /oh/. The only one that I haven't heard him say is /sh/.
  • Drew has several words he uses consistently now. "Uh oh" is by far his most favorite and the one he uses most appropriately. He likes to drop things, like his food and milk cup, regularly and say "uh oh." I love hearing him say the word too much to tell him not to play with his food! Other words in Drew's vocabulary include: Dada, Mama, up, open, no. Quite honestly, the list of words that Drew has said or has attempted to say is getting so long that it is hard for me to recall all of them!
  • The other day Drew's Dad asked Drew, "Do you know where my keys are Drew?" Drew responded, "No."
  • I took the kids to my Dad's work the other day and my Dad said, "Hey there big guy," and we swear Drew said "Hey there!" The imitations he is trying to make of the language he is hearing is amazing. He also said "I don't know" twice on Christmas day imitating the language I was using (and I had witnesses both times!).
  • Drew's receptive language is amazing, and I would guess that when his therapists do his next evaluation he will be just about age appropriate with his receptive language. He understands open, close, up, down, eat, bath, go up stairs, no, come here. Again, the list is getting so long that it is hard for me to recall all of the things he understands!
  • Drew's balance continues to improve and we are hopeful that he will walk in the next few months. (We have had him evaluated and been told that he will walk, he is just slow to do so). He cruises around the house like a champ, sometimes so fast it seems like he is running, actually better than our daughter ever did before she walked. He loves to push his toys around and knows how to maneuver them around obstacles. He has even started to let go of things and stand on his own for short periods of time. We try to encourage him to take a step, but he prefers to squat down and then crawl wherever he wants to go. Both Drew's Dad and I feel that as soon as he captures his balance he is going to take off because he clearly has mastered the coordination needed to walk (and run!).

These past six months have been amazing and have far surpassed my expectations of how Drew would progress. I truly believe that getting him implanted at such a young age has allowed him to make such tremendous progress in just six months. I am so excited with the progress he is making and I can not wait to see what the next six months bring.

Wednesday, December 26

Rockin' Around the Christmas Tree

We had an enjoyable Christmas, spent at home with family. There were many wonderful moments throughout the day, but this was the highlight:



In the video, my sister sped up the 'beat' and Drew started bouncing to the music. The video really doesn't show just how much fun Drew had playing with his sisters' princess piano (or the fun we all had watching him dance; we all - Grandma's, Pa Pa, Aunt, Uncles, even big Sister - actually ceased with the present opening to enjoy the moment). He enjoyed listening to it play all day. Anytime the 'beat' function was turned on he would start bouncing to the beat of the music. While trying to enjoy Christmas 2006, I never thought I would see Drew bounce to the beat of music just one year later. It was the best gift I received!






We hope that you and your family had a relaxing and peaceful holiday.

Sunday, December 23

Author L.N. Cronk Finds Drew an Inspiration for Character in Novel "Pon, Pon"

Author L.N. Cronk lists the following on their website "favorites" page:
Young Drew was the youngest person in the state of Ohio to receive simultaneous, bilateral cochlear implants. I gathered much of my information for Lili's storyline in Pon, Pon from this site. Click here to keep up with Drew's progress!
Download a copy of Pon, Pon and take a look. Those familiar with this blog will notice references to my prior post concerning the similarities between bluetooth headsets for cell phones and cochlear implants, as well as to a mother's hope that her baby can hear her say "I love you".

This reminds me of the purpose with which we started this blog - to make sure that other families who felt "in the dark" about their newborn's hearing loss to have easy access to at least some of the options available to them. I find it very satisfying to know that Drew's story is continually helping others in some way, including as the inspiration for a fictional character.

Wednesday, December 19

Mary, Did You Know?

I love Christmas! The snow, the shopping, the decorating, the family gatherings, the Christmas lights, the list goes on. I just love it! And now with my own children to share in the joy of the season, I love it even more. I am so excited to see Drew and his big Sister's face on Christmas morning! I think that Santa is definitely going to be making a stop at our house.

I turn my car stereo to the 24 hour Christmas music station on Thanksgiving Day, and it stays on that dial until Christmas day. I think I know just about every version of every Christmas song out there! There's one song in particular that leaves me with tears streaming down my face at least a couple of times a day. I can not listen to it without crying. "Mary, Did You Know?" It reminds me of the reason for the season, but this last year it has taken on new meaning.




God has given us our miracle now and not a day goes by without me giving thanks for the gift we have been given. Not a single day.

There are still days when I stop to think about all that has happened in the last year. Sometimes I can't believe that Drew can now hear. He. Can. Hear. He can hear me tell him that I love him. What a wonderful world we live in.

Thank you!

Saturday, December 15

Jingle Bells Part 2

We took Drew and his big Sister to visit Santa last night. The line to visit Santa was very long. Parents all around us were standing in line, frustrated with their misbehaving kids, many threatening to take their children home without seeing Santa. Not Drew's Dad and I, however. Drew and his Sister were very good under the circumstances. Plus, we have been looking forward to this moment ever since last year. Here's video of Drew and his sister visiting with Santa:





I'm sure that the parents all around us thought I was crazy for crying as Drew looked in the direction of the jingle bells. They will never know how moments like these feel for me. I am reminded at times like these just how lucky we are. We are so blessed to live in a world where Drew can share in the sounds of the holiday season. Not only the sound of the jingle bells, but those of Christmas Carols, the crackle of the fireplace, the laughter and excitement in children's voices as Christmas Day draws near. Each new sound he hears or each new word he says are all occasions for joyful celebration.

I look forward to visiting Santa next year with Drew and his Sister, when Drew will be able to talk with Santa and ask for his toy all by himself.

Monday, December 10

A Conversation with My Daughter

As we were getting ready for bed, our conversation went something like this...

Me: "What do you use to hear?"

Her: "My ears!" (Breaking into song) "I use my ears to hear. I use my ears to hear."

Me: "What does Drew use to hear?"

Her: (Pausing for a moment) "Ear plants!"

Ear plants. I love it! Maybe it will be the title of a future marketing campaign by one of the implant manufacturers.

Around our house, we love Drew's "ear plants!"

Friday, December 7

Emerging Language

It is amazing how language and communication skills are developed. Before Drew was born I never really realized all of the little pieces that go into developing communication - babbling, unintelligible communication, single words, two words, etc. Unless something is taken from you - or nearly taken from you - it is hard to have an appreciation for it. As we have watched Drew's language develop immensely this week I asked Drew's Dad, "Do you think there will ever be a day when we see Drew turn to his name and aren't immediately grateful for the gift we have been given?" We both came to the same answer, "No."

Drew's receptive language skills are expanding. He is already understanding so many things, and he now understands the word "kiss." If I'm holding him I will say, "Drew, can Mommy have a kiss?" He will look at me, smile and lean in and give me a kiss! He will do it over. And over. And over. It is wonderful! I am plenty happy getting kisses all day long, but I am ecstatic that he understands me! There are no visual cues; I don't make a kissing sound, pucker my lips, lean in or anything! He is kissing me because he hears me and understands me. Oh, it is wonderful!

Drew's expressive language has also expanded quite a bit this week. We have heard him saying: uh oh, done, up, more, /s/ for snake, /sh/ for shake. "Mama" is back in his vocabulary, too! Drew's Dad and I had noticed an increase in the amount of talking (not babbling, but actual talking, like he was understanding what he was saying) the past couple of weeks. It is as if he is having conversations with himself all day long. We have really felt like he was on the verge of adding some words to his vocabulary, and we have seen the results this week. We are so excited at where he is at verbally, and we love the possibilities that each new day brings. What new word will we hear today?

Drew has shown us just how many things we have to be thankful for!

Sunday, December 2

Championship Bound!

Drew and his family would like to congratulate the Oklahoma Sooners on their defeat of the Missouri Tigers in the Big 12 Championship game last night. We have been Oklahoma Sooners fans for the past seven days, and clearly our loyalty paid off.

We would also like to congratulate the Pittsburgh Panthers on their upset victory over the West Virginia Mountaineers last night. We have also been devoted fans of the Pittsburgh Panthers for seven days, and we appreciate their hard work and effort in defeating the number two team in the country.

Drew is a lucky little boy for the Buckeye's. Since his birth, Ohio State has played in every national championship game (twice in football, once in men's basketball). Maybe we can figure out how to win one?

O-H!

Saturday, December 1

Babyworn

We received our Babyworn upgrade from Cochlear this week. I have been so excited to try this new product. I have to admit its' arrival was a little anti-climatic.

First, the babyworn cord is way too long. There is a lot of extra cord flopping around which Drew likes to play with. He accidentally pulls off his processor and coil all day long, especially in the car. This creates a problem because then he is chewing on his processor and coil. My Mom had to pull her car over after therapy the other day to get the processor out of Drew's mouth!

Second, the babyworn allows a child to use the standard BTE in a way that fits the child. The problem is that the BTE does not have a setting to turn on an audible alert if the coil is not on. With the bodyworn, we would always hear four beeps if Drew's coil would fall off (rolling around on the floor, running into something or just removing it himself). Now we don't have any alert other than the flashing red lights on the processor, which are often hidden by his Hanna Andersson hats. The other night he was attempting to remove all of the ornaments from the Christmas tree. I was saying, "Drew, that's a no-no." He is a very good boy, so usually when we say "no," he stops whatever he is doing. But this time there was no response. He wouldn't respond to his name or anything. I got up from the couch and walked over to him to find that both of his coils had come off. It's a little frustrating to not know exactly when they come off.

I do think that Drew likes the babyworn better and these small issues will go away as Drew gets older. The babyworn is significantly lighter in weight and takes up by far less space on his back than the bodyworn. I think we are going to continue to use the pockets on his clothing to help minimize the amount of cord that is hanging idle on his back. And as he grows, he will be able to tell us exactly when his coils come off, so the audible indicator will not be nearly as important as it is now.

Also in the free upgrade was the Snugfit. I purchased it from Cochlear's website in August, so we already knew what an AWESOME product the sungfit is! I don't know what we would have done without it the past four months! We used the mic-lock for the first month. They were a disaster. The processor was always falling off of Drew's ear.

It's funny what you get used to. I was so against ordering the bodyworn when we placed Drew's equipment order back in April, but our audiologist insisted on it. The babyworn was not available and she was opposed to pinning the processors to Drew's shirt because she felt Drew would not be able to localize sound as well with his ears on his shoulders vs. on his ears. After using the bodyworn for five months, I have to say that I am so thankful we have it. I can not imagine in the early days, when Drew was still so young, rolling on the floor all the time, trying to make sure his processors were on without the audible alert.

Thursday, November 22

T-H-A-N-K-F-U-L

We were gathered with our family today and began discussing over our turkey and pumpkin pie all that we have been through since we last sat at the Thanksgiving table. Last years celebration was muted to say the least. We were just beginning our journey with Drew, and we were struggling through the first days of diagnosis. There was so much uncertainty for what Drew's future would hold. My how a year can change things! Today we were all happy, lively and quite honestly I think it was one of the best Thanksgivings ever.

I am overwhelmed with things to be thankful for this Thanksgiving. I could try to make a list, but it would not be exhaustive. If it were this post would be too long for you to read! It is hard to even know where to begin, and I don't want to accidentally leave something out. So, I find this appropriate:

T - oday. Everyday with Drew and his sister is a gift, and holidays are especially meaningful with them. Listening to Drew's Sister say her Thanksgiving prayer was beautiful. ("Thank you for the birds that sing. Thank you God for everything. Amen.") I am thankful that we were able to spend the day with our immediate families and that both sides of our family get along so well.

H - omework! I never thought I would say that, but I am thankful for all of the homework Drew's three therapists give us! Drew has three of the best therapists around. He likes each one of them so much and responds very well with them. They all do an excellent job of showing us exactly what they are doing and then explain why they are doing it. They give us so many things to work on at home with Drew. We also appreciate how well the three therapists work together and coordinate his therapy's.

A - udiology and technology. I am thankful for the gift of cochlear implants and for the audiologist that works with Drew. She continues to do an excellent job of programming Drew's processors so that he is hearing optimally with his implants. She has been very responsive to any equipment issues or questions we may have.

N - ew sounds. I am thankful for all of the new sounds Drew has made, from repeating "ahh" in the days just after activation to the "da da da" sounds now. I am thankful for the possibilities each day brings. Drew's first word, understanding of a new word or concept. I am thankful that Drew has taught me to appreciate all of these things that so many others take for granted.

K - ids. I am thankful for all of the families in this area that are willing to share their kids with us! When you have a child that is newly diagnosed as profoundly deaf, one of the best things you can do is to meet older deaf kids who are listening and talking with their cochlear implants. Those kids gave us the hope we needed to carry on in the early days of Drew's diagnosis. We are thankful for every family that shared their kid with us.

F - amily. Especially my Mom. I don't know what I would do without her. She watches Drew and his sister while I am at work each day. She takes Drew to his therapy sessions and is his therapist every day of the week. She has learned so much about auditory therapy and works with Drew on a consistent basis. It is no stretch to say that Drew's successes are directly attributed to her spending so much time working with him. I am forever grateful.

U - ncovered Medial Expenses can be APPEALED! I'm so thankful that I have learned how to appeal denied medical coverage and how to write appeals. I am thankful that my insurance company has overturned their previous decision in all of my appeals thus far. I am also thankful to all those who have walked this path before, as I know I have fought far less coverage issues than others before me.

L - ove. I am thankful for my relationship with my husband. It is amazing how much stress can be put on a relationship when you bring a baby into the world. It is even more amazing how much additional stress is put on a relationship when you have a child with a disability. We have managed to make it through this, and our relationship is actually stronger today having gone through the past year. I am very lucky to have him in my life and I am thankful that he is the man my children call "Daddy".

Happy Thanksgiving to All!

Friday, November 16

What Happened to Mama?

Drew is talking...a lot. But what happened to Mama?!?

video

Drew has quite the personality. I think he is saying "Dada" on purpose! Every time I ask him to say "Mama" he says "Dada". Actually, my daughter did the exact same thing. She said "ma ma ma ma" first and then went months before she said it again. It looks like Drew is going to follow in his big sisters' footsteps!

It's amazing to watch Drew's development. Not only is he developing his language but he's been working hard on his gross motor skills again this week. He stood on his own a few different times for three to five seconds. We have noticed a drastic improvement in his overall balance in the last week. He has been pulling up on the furniture for quite some time now, but he has always been shaky when standing. In the past week the wobbling is gone. He will also let go of whatever he is holding on to and will lean forward and catch himself on something else. He doesn't have to be holding on at all times anymore. And with walking...tremendous progress.

video

Did you notice his receptive language at the end? He seemed to understand "backward"! Drew's Dad and I are just amazed with what he understands. We are very proud of all the things our little boy has accomplished.

Thursday, November 15

The Special Mother

I recently stumbbled across this inspirational story written by Erma Bombeck:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instruct His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect –she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. Nor, will she consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute every day of her life, because she is doing My work as surely as if she is here by My side.”

“And what about her Patron saint?” asks the angle, his pen poised in mid-air.

God smiles, “A mirror will suffice."

Friday, November 9

"Ma ma ma ba da da"

Drew is babbling! We have heard all sorts of "ma ma," "da da" and "ba ba" combinations over the past week. It started last Friday, November 2, when he said a whole string of "ma" while we were eating dinner. He is such a happy little guy and we are so happy listening to him talk!

Drew has had some excellent therapy sessions over the past two weeks. He is obviously making all sorts of new expressive sounds daily and his receptive language is exploding. He understands up, down, on, off, open, close, push, pull and the list goes on and on, and it seems to expand daily. When presented with two animals and their respective sound he will select the correct animal, for instance picking up a cow when he hears "moo."

One night this week Drew and I were playing in the living room when Drew's Dad turned on the water for the bath tub. Drew looked up at me, indicating that he heard the water turn on. I said, "Drew, it's time to take a bath," and he took off crawling toward the stairs, crawled up the stairs and into the bathroom. I don't know what else to say: cochlear implants are amazing!

We had some friends and their babies over to watch the Ohio State vs. Wisconsin football game last Saturday (Go Bucks!). There were points where we thought the babbling was coming from our friends babies only to find that it was Drew talking!

I have of course tried to get all of this new babbling on video, but as soon as he sees the camera he stops talking! He is more interested in it than what he was previously doing. Video to come. I am working on it...

Thursday, November 1

Insurance Coverage for Therapy

Drew's Dad provided information regarding insurance coverage for cochlear implants in a post he wrote a few months ago. There are so many pieces to the cochlear implant insurance puzzle that I would like to provide some information on insurance coverage for therapy.

Those that are traveling or are going to travel the cochlear implant path should know that the individuals' success with his or her cochlear implant is achieved with hours of therapy. You must learn to listen and process sound before you can begin to talk and communicate. There is only so much the doctor and audiologist can do; without learning how to listen, the recipient is not going to have optimal success with his or her cochlear implant.

Many insurance companies have guidelines for therapy. Some insurance companies will provide services for a certain number of visits in a calendar year while others set a dollar maximum. For example, Anthem/Blue Cross Blue Shield of Virginia, our provider, has a $500 maximum for speech therapy in a year. With a one hour therapy session costing $189, we reached our maximum in less than three visits. Most families, including ours, and especially those with young children, do not have the means to financially pay for this necessary therapy.

There is hope. I have been "battling" the insurance company over therapy coverage for several months and finally have secured coverage for Drew's therapy sessions. There is a specific insurance billing code for "aural habilitiation following a cochlear implant." This code recognizes that cochlear implant recipients must have listening habilitation. And it recognizes that the therapy the recipient is receiving is NOT speech therapy, but rather therapy to learn to use their new found hearing.

If you are having issues with insurance coverage for therapy, I implore you not to give up! Many insurance companies deny coverage on the initial try because they know that some people will not take the time and energy to appeal. Many times making just one phone call can secure coverage. If not, you can always make a written appeal requesting coverage. And, you can utilize your physician and audiologist for medical documentation and support.

Wednesday, October 31

Tuesday, October 30

Happy Halloween!

I am so excited for Halloween and so happy that it is finally here! I think it is because I have the cutest little witch and pirate to take trick-or-treating tomorrow night. I have decorated the house this year like never before. We have pumpkins, ghosts and spiders adorning all of the tables and mantles in our house. We have carved pumpkins, baked pumpkin seeds and we even have put up ghost lights on our porch. Drew and his sister make make every day more enjoyable, but especially holidays.

I have been looking forward to Halloween for some time. Really since last year. You see, Halloween Day last year was the low point in our journey to "turn on" Drew's ears. You might think that D Day would be the low point, but really the days immediately following the diagnosis were worse. They were filled with so many unanswered questions. The uncertainly surrounding Drew's future made for some very long and difficult days. October 26th was awful, but the not knowing was even worse. How profound was Drew's hearing loss? What could be done? Would he go to school with his hearing peers? The list of questions went on and on and the uncertainty was unbearable.

Why was Halloween day, in particular, so hard? First, I found out that the audiologist that did Drew's test knew he had a profound hearing loss and did not tell me. After researching hearing loss, intervention and amplification over the weekend following Drew's test, I decided to call the audiologist. I had several questions for her on the testing she had run, results and amplification. I asked her, "Do you think Drew will benefit from hearing aids?" Her answer, "No, he will need a cochlear implant." How did she know he would need a cochlear implant if she didn't know the level of his loss? I requested the paperwork from his tests (she had not provided them to me on the 26th) and on the top of the paper she had written, "V Wave absent at 90db bilaterally". She knew he was deaf and did not tell me.

After finding out that a cochlear implant was likely in Drew's future, I decided to contact the insurance company to get information about our insurance plan. The representative from our insurance company told me that we had no (that's right, zero) coverage for hearing related issues. This included all diagnostic testing, hearing aids, cochlear implants and therapy for hearing related issues. When we learned of Drew's hearing loss I did not think that things could get any worse. But here I was learning that my insurance company would not cover the intervention that Drew needed. How would we pay for all of this ourselves? Luckily follow up calling in the days that followed revealed that we did in fact have coverage, so this fear was quickly dismissed.

It was cold and misting rain on Halloween day last year, which only added to my depression. I barely brought myself to cook dinner and once that was done I couldn't bring myself to do anything else. That included taking the kids trick-or-treating. Halloween was the one time throughout everything that I did not do what I should have for my children. I know that they will not remember the fact that they did no go trick-or-treating when they were so young, but I will remember.

I think that I have done a really good job handling all of the ups and downs surrounding Drew's hearing loss. From day one I jumped into finding out as much as I possibly could about hearing loss and intervention. I accepted the diagnosis and realized that Drew is going to have a great life. But there are days that were difficult and the anniversary of those days bring on a flood of new emotions. I am so happy with where we are at in this journey, but I remember what it was like at this time last year. It's a weird feeling to be so happy with where you are but remember how badly you felt just a year ago. At that time I could not have imagined how far we would come in just one year. I am confident that with time these memories will fall farther into the abyss of 'things not worth remembering' and the new ones of Drew hearing will be in the forefront of our minds.

Sunday, October 28

That's What Friends (& Family) Are For

Dear Family & Friends,

It's been a year? In some ways it seems like yesterday, in others it feels like forever. We have known of Drew's hearing loss for one year. My how things have changed, and yet somehow feel the same.

I would like to take a moment and thank those that have helped us in so many ways throughout this year. We are so blessed to have such wonderful family and friends that care so genuinely for our family. I can not mention everyone or every little act of kindness, so I picked a few things that stand out in my mind:

  • My Mom, Dad, Sister & Brother: Thank you. Thank you for giving me the pep talk I needed in the crucial moments after Drew was diagnosed. I don't know that I would ever stopped crying or gotten out of bed without your words of encouragement and support. Thank you for taking care of Drew's Sister with a moments notice so that I could take the first available appointment to see a doctor, audiologist or therapist. And thank you for loving all of us unconditionally. You mean more to us than you will ever know.

  • My MIL: You have tracked down more people than I probably know researching cochlear implants and oral deaf education. I know that you have spent many sleepless nights gathering as much information as you can for Drew. You have also talked with powers that be at Children's trying to get Drew in sooner than what they tell me over the phone. Drew is known all over the city because of how much you talk about him - only because you love him so much.

  • Drew's Great Aunt & Uncle: Thank you for calling upon a friend to get Drew in for his diagnostic ABR months sooner than we were originally scheduled. One of the hardest parts of this journey was the not knowing, and you shorted that time frame immensely. We can not imagine how different this journey would have been had we not traveled to St. Louis and seen the Moog School for Deaf Education. Those children gave us the hope we needed to carry on and to make the decisions needed for Drew to get him to this day. We are forever grateful.

  • My Friends: For picking up the phone the day you found out about Drew's hearing loss. I know that you sat at your computer, reading the email I sent with the diagnosis, for some time trying to think of the perfect words, but you realized that there were no words to say. I needed your phone calls more than you know. Thank you for not being afraid to talk about Drew's deafness with me. Thank you for calling weekly to see how the little guy is doing (or are you calling to see how I am holding up?). There have been so many unforeseen things that have come from Drew's hearing loss, and one is how this experience has deepened our friendship. I am blessed to be able to call you friend.

Drew is an amazing little boy and I feel so lucky that I am the one he will call "Mommy." Through this year we have all laughed and cried together. We have celebrated milestones that we at one time thought might not be possible. The love I have for him and his sister is indescribable. Drew has an amazing journey ahead of him and I know that he looks forward to sharing it with you.

Love, Drew's Mom

Thursday, October 25

D Day

Well, it is upon me. The anniversary of the day - October 26, 2006 - that forever changed my life. Through this year I have been strong and held my composure. I had to in order to make sure I did everything that I needed to do for Drew. So many times I was told how well I was handling things, although there were many times I wanted, needed (and did on occasion) breakdown. For some reason this anniversary is hitting me harder than I had expected and I'm fighting through tears as I type.

It was a rainy fall day, with a fierce wind that put a chill in the air. Beautiful golden leaves were falling off the trees and blowing all around, covering our lawn and street. It was the kind of fall day that reminds you summer is over and another winter is headed your way. Drew's Sister spent the day at preschool and with Grandma because of Drew's doctor appointment. The appointment with the ENT was scheduled for 2:00 pm.

I decided that it was a great day to go shopping! I can remember how happy I felt walking through the mall with Drew that day. I was in no way worried about the appointment later in the day. Drew's Dad and I were confidant that there was still fluid in Drew's ears. I enjoyed picking out a birthday present for my Sister and eating a nice lunch at Panera Bread.

After leaving the mall, I still had time before Drew's appointment, so I decided to stop at the grocery store to pick something up for dinner. Drew's Dad and I love crock pot spaghetti, and with the chill in the air, it felt like a great day to have our first "fall" meal. Drew fell asleep in the car on the way home from the grocery store. When I got home, I tip toed around the kitchen making dinner while he slept in his car seat sitting on the kitchen floor. I knew that if he were to wake he would want to eat, and I did not have time to make dinner, feed him and get to the doctor on time. So I was quiet. I lifted the stock pot out of the cabinet so quietly. I gently laid the spaghetti in the pot and I went to the bathroom to get water. There were points that I would make a little too much noise and I would hold my breath and turn to see if it woke Drew up. He never startled.

The ENT's office was cold and sparse, just as before. Something was different this time, however. My behavior. I was not nervous nor was I shaking. I notified the receptionist that we had arrived and then took a seat in the corner of the waiting room. I gently flipped through a magazine while I waited for Drew's name to be called. I only sat for a few moments before they called us back.

I sat in the same office as before. This time I went ahead and removed Drew from his car seat and held him in my arms. He was still sleeping. He was so warm and cozy in my arms, and I kissed his forehead. As the doctor walked in, wearing the same funny thing on his head, I told him, "I'm ready for you!" He was just as I had remembered, middle aged and unfriendly. He looked in Drew's left ear first and proclaimed, "The fluid is clear." My eyes got big and my heart sunk. I tried to maintain my composure when inside butterflies were jumping in my stomach. He had checked the right ear in the meantime. Same answer, "The fluid is clear in that ear, too."

I sat for a moment and then the doctor asked, "So, do you think he can hear?"

"I don't know," I responded, in a soft voice. "I was certain that there was still fluid in his ear because I haven't seen any changes in his behavior." It was at that time that the doctor picked up a metal pan and dropped it to the floor. The clanging and banging of the pan hitting the floor was so loud that people in the waiting room probably startled. Drew laid peacefully asleep in my arms. The doctor shrugged his shoulders and said, "I'll be back in a minute."

He returned with an audiologist. She was young and friendly. She escorted me to a new room where she ran an OAE test on Drew. His results were "refer" at all five frequencies in both ears. My heart sank further, as if that was possible, and the butterflies danced harder in my stomach. "Let's do a different test," she said. "The OAE is just a screening test and can produce false results." She moved Drew and I to another room.

From there much of the rest of the testing is a blur. I sat in a rocking chair, holding my baby while all sorts of wires were placed on his head. The audiologist switched the equipment from the left ear to the right and then back again and again. She would leave the room and return with another audiologist. Then she would leave and return with a doctor. I watched the hand on the clock on the wall tick, tick, ticking. One hour went by. Then another. I sat in the rocking chair, holding Drew and I cried. I would ask, "How are things going?" And I would get the same answer each time, "Let's wait until I'm finished." I continued to rock him and closed my eyes. The tears streamed down my cheeks.

Finally the audiologist removed all of the wires from Drew's head and ears. She gathered my belongings and took Drew and I back to the office we started in. She told me that she was going to review the results with the doctor and he would be in shortly. She left the room, leaving the door partly ajar. I sat in the office just looking at Drew. He was so perfect; how could anything be wrong with him? About that time the nurse that called Drew's name in the waiting room walked by. I think she was shocked to see me still in the office, nearly three hours later. She tapped on the door, pushing it slightly open. "Everything, O.K.?" she questioned.

I couldn't hold them back. The tears came streaming down my face and I began to sob. I have never felt so scared, helpless and alone in my life. I had no idea what the results of these tests would mean for Drew or for my family. I had no idea what could be done for a child with hearing loss. The gravity of the day was sinking in and it was too much for me to handle. I cried and cried.

Finally the doctor came in the room. He seemed even more unfriendly, if that was possible, this time. "Well," he paused, "that's not what we wanted."

Excuse me? That's not what we wanted? That's all you have to say to me? Your audiologist has been testing my son's hearing for almost three hours and all you can say is, "That's not what we wanted?" What is not what we wanted? Tell me what is wrong with my son!

The ENT continued, "Well, you'll need to have more testing done." He would pause for what seemed like an eternity between each sentence to make the most awful hissing sound. "Your son has hearing loss." Insert awful hissing sound, "Do you have any questions?"

The situation was too intense and I felt the walls of his office closing in on me. I was alone, scared and too upset to ask any intelligent questions. I continued to cry, which I could tell was making him very uncomfortable. Finally I mustered up, "What can be done?" He looked at me for a moment and said, "Well, we don't know until further testing is completed." At that point I was done with him and he left the room. I started gathering my things while trying to get a handle on my emotions. I heard a faint tapping at the door. It was the audiologist, checking to see if I had any questions for her. Again, I was at a loss. I can only remember that she told me that many children with hearing loss develop speech equivalent to their hearing peers with things like hearing aids and cochlear implants.

And that is how I left. Clinging to the hope that Drew would be one of the "many".

Monday, October 22

Drew Could Not Hear

One year ago today I knew that Drew could not hear. He was not responding to most environmental sounds around the house, like the dog barking, door bell ringing or his sisters loud squeals of delight. Occasionally I would see him startle, throwing his arms while sleeping, in perfect time with an environmental sound. But I knew he was not able to hear. I convinced myself that the reason was only because of the fluid the ENT had found weeks earlier. Why would I suspect anything else?

Drew's Dad and I were both feeling pretty good one year ago. We had a reason for Drew failing his newborn hearing screening. It was our glimmer of hope and we truly felt that everything was going to be just fine. We were holding on tightly with both hands firmly grasped on the thought that the fluid would clear and Drew would pass his hearing test. I can even remember Drew's Dad saying one night, as we went to bed, "I hope that my lack of worry isn't setting it up for them (the ENT and audiologist) to tell us he can't hear."

Drew's Dad and I knew that the fluid was still there. We did not feel as though the fluid was clearing because we had not seen any change in Drew's behavior indicating that he could hear. So we decided that I would take Drew to the follow-up ENT appointment on October 26th. Alone.

All the ENT was going to say was, "Come back in one month and we'll see if the fluid has cleared," right?

Saturday, October 20

Drew Can Say "Yea!"

We're not counting this as the official first word, but Drew said "Yea!" the other night. While we ate dinner Drew was doing a great job eating his table food, so Drew's Dad and I were clapping for him and saying "Yea, Drew!" On the way home, Drew decided to say "Yea!" We grabbed the camera to catch this. Please excuse the crying in the background. Drew's Sister is two and having her share of meltdowns these days.

Tuesday, October 16

The Days Leading to Diagnosis

Drew failed his newborn hearing screening on September 26, 2006, just two days after he was born. Many of Drew's first days and nights are such a blur, with the sleep deprivation and all. But I knew in my heart very early on that something was not right. Why would he not pass his screening? How could he possibly not hear? We have no history of hearing loss in our families. This can not be happening.

I can remember that Drew's Dad was not overly concerned about the failed results. The audiologist had given him some encouraging words like, "many babies who do not pass their screening have normal hearing." I did not find comfort in those words. I was worried from the moment Drew's Dad told me he did not pass. I had been showering when the audiologist came in to explain Drew's test results so I never had the opportunity to ask any questions. All we were given was a list of places that do diagnostic ABR's for infants and told to schedule a follow up test.

In my heart I knew he couldn't hear. Why hadn't Drew calmed to the voice of his Daddy right after birth? He was crying at the top of his lungs with his Daddy talking to him and he continued to cry. When my daughter was born, Daddy's voice instantly stopped the crying and she turned to look in his eyes for the first time. Why hadn't the squeaky door in my hospital room woken him as nurses and family members came and went? He never startled. Never woke to a loud sound. I knew something was wrong.

We took Drew home on the same beautiful September day as his hearing screening. I can remember my Mom bringing Drew's Sister home (she had stayed with Gamma and Pa Pa while we were in the hospital). I told my Mom that Drew had not passed his hearing screening and she was just as confused and worried as I was. I pulled out the audiologist report from the hospital. It was so confusing to me and I had no idea how to read it. I began calling the list of places we were provided to do the follow up testing. Many of the places on the list did not do diagnostic ABR's on infants, and those that did were booked until December. I called places for over an hour. When they would tell me they could not get Drew in until December I would cry. I would try to mask my sadness and fears while finishing the conversation, "Well, thank you for checking, but I'm not going to wait until December. I'll try somewhere else." Finally, the receptionist at Columbus Speech and Hearing took pity on me when she could hear me crying through the phone and scheduled him for early November.

Drew had jaundice as a newborn, so we spent many days at the pediatricians office getting his belirubin tested. At his first appointment, two days after we left the hospital, I asked his doctor about the failed hearing screening. His responses left me with little hope: "Well, I've never had a baby fail his newborn screening." Never, seriously? You've been in practice for over 30 years and have never had an infant fail the test? Then he continues, "I don't know exactly how to read these tests, but even if he is deaf, there are these things called cochlear implants so he won't get hit by a car if he is playing in the street." I was standing at the time he was telling me this, but I had to sit. The gravity of the situation was too overwhelming and I sobbed. The kind of sobbing that is uncontrollable. There I sat in his office, completely inconsolable. It was awful. He nor Drew's Dad knew what to do. Once I pulled it together I was able to say, "Well, can you at least call around and try to get a follow up test sooner than the first week of November?" He obliged, and called later that day to tell me Drew would be seen by an ENT on October 4th.

I cried a lot after that. As I would nurse both of my babies I would sing and talk to them. Despite all of the visitors and chaos of having a new baby, there were always those moments of breastfeeding that were just me and my little baby. I loved those times with both of my babies. But there was always a fear when feeding Drew: What if he could not hear me singing? What if he couldn't hear me telling him how much I loved him? I would cry. Every time I would feed him I would cry. It actually became a bit comical to my Mom and Sister who spent many of the first days of Drew's life helping me at home. They would bring the Kleenex as I would start to feed Drew, knowing the tears would follow.

I can remember one night in particular, about four days after Drew came home from the hospital. Drew was asleep in his pack in play in the corner of our living room, my Mom was cooking dinner and Drew's Dad had just gotten home from work. Drew's sister was running around the living room playing with her toys, in particular her popper. She was going every where with that thing and making a ton of noise. I kept telling her not to pop it by Drew, but she did anyway. He never startled, never woke. I sat on the couch watching her play and cried.

I actually get teary eyed just thinking about the things I went through this time last year. It was such an emotionally draining and physically exhausting time. I feel cheated because I never got time to have any worry free moments with Drew. I spent a lot of my time on the phone scheduling appointments or on the Internet researching hearing screening and interventions for children with hearing loss instead of resting and spending time with my new little boy. I'm sure that many parents who have been through this journey like me have many of the same feelings.

I could not sleep at all on October 3rd. I was worried about what the coming day would bring and if I would be strong enough to hear what the ENT had to say. Drew's appointment was not until late in the day so I had to sit around all day waiting for it to come. My Mom drove Drew and I to the appointment. She was insistent on doing so, mainly because she and my Dad wanted to make sure that I wasn't alone if Drew was diagnosed with hearing loss.

The ENT's office was cold and sparse. I was uncomfortable from the moment we walked through the doors. My stomach was uneasy and I was having a hard time keeping myself from nervously shaking. The ENT walked in the room. He was middle aged, unfriendly and had something funny on his head. He asked a few questions and then looked in Drew's ears. It took all of a couple of seconds to find fluid in both of Drew's ears. I looked at him sternly and said, "Do you think that is why he failed his hearing screening?" The ENT said, "Yes. I will see him back in three weeks. Hopefully the fluid will have cleared and we will retest him then."

Drew can hear, I kept telling myself. I was in a way relived, but still uneasy. I kept telling myself that everything would be O.K. but deep down I still thought that something was wrong. I scheduled a follow up appointment for October 26th.

Friday, October 12

Why Bilateral?

Drew's Dad posted some publications a week or so ago that support bilateral cochlear implantation. I think that it is important for parents considering cochlear implants for their child to understand the medical data supporting bilateral implants. However, I think it is equally important to understand the social and emotional benefits of bilateral cochlear implants.

Drew had his first equipment problem this week. The shoe cable on his body worn processor went bad on Monday evening. I called Hear Always to order a replacement. The replacement cable arrive on Thursday (the Columbus Day holiday held mail up). If Drew had just one cochlear implant he would not have been able to hear for three days. If I stop to think for a moment, can I really imagine what it would be like to not hear for three whole days? Can you?

In Drew's case, being so young, it would not have affected him all that much, but what about older children? How would they function in their classroom at school, talk with their friends or hear traffic going down the street while playing basketball at home? I think that three days would seem like and eternity and would be very isolating. I am so happy that Drew has bilateral implants because he was able to hear the whole time we were waiting on replacement cables. He even learned what "no" means during that time (not that he listens to me!).

Just another thing - as if there wasn't enough already - for parents to consider.

Wednesday, October 10

CI Dilemma #1

We've had our first dilemma...

Often CI children wear their body worn processors in a pocket(s) attached to the child's clothing. So, what do you do when your CI child spills a cup of milk all down his shirt less than 20 minutes before bed-time?

a. Leave him in the wet shirt so he can keep his ears on.

b. Remove his ears and wet shirt and call it a day.

c.




The diaper works too!

I have to say that we entertained the diaper idea for a few moments but I actually managed to keep both ears on while removing the wet shirt and putting on a new shirt. Man I'm getting good with his equipment!

Tuesday, October 9

Don't Forget to Register

The Ohio Chapter of the AG Bell Association will hold its annual meeting on October 27, 2007 in Columbus. Don't forget to register for this exciting event! Registration is open through October 17th.

If you have any questions about the meeting please leave a comment.

Saturday, October 6

A Long Over Due Update on Drew

Life with two young children is quite busy these days. Add in a full time job and a lot of family activities and my blogging somehow falls behind. With that I have failed to update all of the exciting things that have been going on with Drew! Here are some things he has been doing over the past few weeks:
  • Drew has been concentrating hard on his motor skills and has made tremendous progress in the past week. He can climb the stairs like a champ. He is all business and can get to the top of the stairs in about two seconds flat. He is also starting to walk with his walking toy and does well putting one foot in front of the other. I can not help but notice that he struggles with his balance. I feel that he has some underlying vestibular issues as a result of his hearing loss that are affecting him. I am concerned that he is not yet standing on his own, but I am thrilled with how hard he is working on his motor skills. I spoke to the pediatrician about this at Drew's one year appointment and he did not seem overly concerned about the fact that Drew can not stand on his own. He said that he will reevaluate him at his 15 months appointment and go from there.
  • Another area of concern has been Drew's ability to chew solid foods. Whenever he put solids in his mouth he would chew for a little bit and then when the food would get to the back of his throat he would gag and act like he was choking to death. Seriously, it has been very scary at times. In the last week he has begun to really chew up food and swallow it without choking! In fact the last four nights he has eaten some solid food and not had one choking moment. It seems like such a minor thing but it makes life so much easier! When he can chew on a biter biscuit at a restaurant for 30 minutes it makes our dinner much nicer. I think now we will move at a fast pace with him transitioning from jarred baby food to solid table food.
  • Drew's babbling is expanding daily. He has added the /s/ sound to his repertoire. He also will try to "moo" like a cow when we work with him on animal sounds. We are working on body parts right now, using baby dolls, Mr. Potato head and ourselves as models of the spacialilty of various body parts, like eyes, ears, mouth, etc. Drew is very interested in mouths and will always touch mine when I am talking to him. I'll be interested to see if this is the first body part he identifies on his own.
  • Drew understands the words "up" and "eat". It is very exciting to know that he is actually able to hear and comprehend different concepts. If I ask him, "Drew, do you want up?" he will put his arms in the air and wait to be picked up. I love that Drew has made me learn to appreciate little things like this. I am now practicing little things with him like, "How big is Drew?" and then throwing his arms in the air while saying, "So Big!" He has so much fun with that one.
  • Giving kisses is Drew's favorite pass time now and Drew's Dad and I are loving it! I got three kisses (and by kiss I mean he leans in with an open mouth and slobbers all over you!) when he woke from his afternoon nap and Drew's Dad got eight kisses before putting him to bed tonight. Drew does not make the kissing noise while giving the kisses, but he will make it in response to our kissing him.
  • Drew received a lot of "learning to listen" toys for his birthday and we are loving all of them! He has a house, barn, trucks, zoo and lots of new books. We use them to practice things like open and close doors, animal sounds, and one step directions like "Put the dog in the car". Drew is very active now and really likes doing these activities (except when he is supposed to do them at therapy! He clams up at all of his therapy appointments.)

Drew continues to amaze us daily with the progress he is making. October 26th will mark the one year anniversary of finding out that Drew is deaf. This month has been hard for me as I reflect back on my emotions during this time last year. I will share more on that later. It's time to watch the Buckeyes vs. the Boilermakers. Go Bucks!

Thursday, October 4

Publications Supporting Bilateral Cochlear Implants

The following is a list of links to different research studies or publications that we have come across which supports the use of bilateral cochlear implantation. We hope that you find them helpful.

Tuesday, October 2

Drew Is Helping Other Deaf Children!

At only one year old, Drew is already helping other deaf children to "turn on their ears".

A nine month old little girl in New York was scheduled for her cochlear implant surgery, but was later denied coverage by Anthem Blue Cross Blue Shield because she was under one year old. Their doctor submitted a letter explaining the need, and they tried to get help from the Let Them Hear Foundation, but nothing had worked. The family had their final appeal with the insurance company later that day and a family friend posted a plea for help on CI Circle:

I've heard there are studies supporting implantation under 12 months. Does anyone happen to know those studies offhand. I was hoping to put a few things together for them to take with them to their appeal this afternoon.

We saw her cry for help and emailed her, explaining that Drew had successful bilateral cochlear implant surgery at just under nine months while covered by Anthem. We sent to her a copy of Drew's approval of coverage letter and "Explanation of Benefits" from Anthem in the hopes that it would help the little girl in New York. We later got this response:

I'm happy to report that my husband's co-worker and his wife won their appeal with Anthem, so their daughter will be able to have her surgery as planned on Friday. Thanks for all your help and advice.

...I think Drew's EOB really made the difference. Thank you!

It feels great that Drew was able to help that girl, even though we don't know her or her family. If you or someone you know is denied insurance coverage for cochlear implants, don't give up! Please let us know if we (and Drew) can help you.

Friday, September 28

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.

Sunday, September 23

One Year Ago

One year ago today, September 23, 2006, we were watching the Ohio State vs. Penn State football game at our friends' house. We had a great time eating, talking and watching our little girls (they have a little girl about 2 years older than Drew's sister) play together. We were all focused intently on our beloved Buckeyes as their quest for a National Championship marched on.

My friend and I were both nine months pregnant at the time, so at points during the game we were discussing our upcoming new additions, but overall, we were just concerned with an Ohio State victory! I know my friend and I were both hoping we would go into labor well before our due dates (which were in mid-October), but little did I know that my water would break in the wee hours of that night. I certainly know that none of us watching the game together that day had concern over our baby-to-be's hearing. It's amazing how a year can change things.

I did not know while enjoying a Buckeye victory what this year would have in store for my family. The countless doctor appointments, hours of Internet research on deafness, cochlear implants and oral deaf education, therapy appointments with Help Me Grow, Early Intervention and MR/DD, just to name a few. It has been an emotionally draining and physically exhausting year in so many ways. Yet when I sit here reflecting on Drew's first year, I just keep thinking, "We Made It!"

We made it. We pushed on each day despite being devastated that our son could not hear. We got over the "why" questions, although they still do surface every once in a while. We made it through hearing aid trials, evaluations, therapies, surgery and Cochlear Implant activation day. We have experienced the changes in Drew since his surgery. The remarkable change in his balance (he could sit up the day after his surgery!), the change in his personality (it's really exploding!) and the change in his language (obviously!). The last three months have been truly remarkable and made those early, worrisome, sleepless days so worthwhile!

What would I change? I have been asked this question a lot over the past couple of weeks. I'm not quite sure why, but it has surfaced. It's an interesting thing to consider, since there is really no way to change anything. But if I could, what would I change? The answer is easy, really. I would change nothing. You see, if I were to change something (like to give Drew hearing) it would change the Drew I know and I can not imagine him any other way. He has the most beautiful eyes, the most infections smile and his laughter makes me forget about everything going on in the world around me. He is my Drew and I love him just the way he is. He is his own individual; happy and unique in his own little way. He is everything I wasn't expecting and everything I needed all in one handsome little boy. He has taught me to appreciate the smallest, most ordinary things that I would usually have taken for granted.

My Brother-In-Law wrote me a letter a couple of weeks ago and ended with "the juice is worth the squeeze." We have been emotionally drained at times, frustrated, sad, exhausted, overwhelmed and we have even questioned God at times. We have been humbled by the support we have received from family, friends, teachers and doctors. We have met so many wonderful people that would never have come into our lives without this experience. This year has been joyous, happy and has flown by. Most importantly, this year has been so rewarding for me and all of those that have helped to get Drew to his first birthday! I have loved every minute of being Drew's Mom (even when he was wide awake at 2 AM!) and feel blessed to have him as my son.

As I celebrate Drew's first birthday, the juice is better than I could have imagined!

Thursday, September 13

Imitating Sounds

Two and a half months ago our little boy could not hear anything! O.K., Maybe he could hear a jet engine sitting right next to his ear, but for all intense and purposes, he couldn't hear. But two months after bilateral cochlear implant surgery we are singing a different tune. Our boy can hear, and not only that, he is learning to talk! Cochlear implants are truly amazing.

Drew can growl...and I ain't lion!



Here Drew is imitating sounds while eating:



I am so excited about the progress Drew has shown in only two months. He is imitating new sounds daily and is constantly "talking". We have now heard /m/, /ah/, /e/, /g/, and /k/ sounds. He is imitating non-speech sounds like tongue clicking, kissing and raspberries. If you ask him, "Drew what does a cow say?," he will repeat back the /m/ sound for "moo." He is showing receptive language at nine months and expressive language at six months of age. Not bad for a little boy with a hearing age of two and a half months.

There are times daily when both Drew's Dad and I stop what we are doing to watch our little boy hear. (That sounds funny, but we really do watch him hear!) Yesterday we were sitting on the couch watching the evening news and Drew had crawled to the front door, out of our sight. I called out, "Drew, come here please." Then I waited. It took just a few seconds and around the corner came my little boy. It is just amazing.

We are looking forward to what the next two and a half months will bring. Hopefully we'll hear "Mama" and "Dada". What a moment that will be.

Thursday, September 6

Pavarotti's Passing

Today Luciano Pavarotti, the legendary tenor passed away. In reading the news, I found Pavarotti singing Ave Maria on YouTube and began to listen.

Our daughter was focused on watching The Wiggles and didn't notice, but about a minute into the song I felt eyes upon me.

Drew was sitting on the floor to my right and was staring directly at the little window with Pavarotti in the middle of a note. Over all the background noise, he determined that he wished to hear Lucianone sing. As the music continued, I took a moment to watch him, realizing that this little moment was a small bonus in life. Something I never thought I'd be able to share with my son.

Drew will never know Pavarotti (and I myself don't know much about him), and he certainly won't remember this little moment. But I will. Thank you Mr. Pavarotti.

Sunday, September 2

Drew's First Consonant!

Drew had a milestone today. Drew's first consonant, drum roll please, is /g/. We were talking to him after his nap this afternoon when he broke out the /g/ sound. At first we weren't sure, but he repeated it several times for us.

Drew even had a sing song conversation with Daddy using the /g/ sound over and over. Drew's Dad would say "ahhh gooo" and then Drew would repeat it. Then Drew's Dad would say "ahhh" and Drew would say "goo". We had so much fun this afternoon listening to him repeat the sound over and over.

Drew's language now includes the following sounds: /ah/, /m/, /e/ and now /g/. Not bad for a baby with a hearing age of a two month old!

Saturday, September 1

Drew Loves The Ohio State Buckeyes!

Drew is ready for the start of College Football season and is a huge supporter of The Ohio State Buckeyes. Watch Out! He's about ready to tackle you!
 

Go Bucks!
Posted by Picasa

Thursday, August 30

AG Bell Ohio - Annual Meeting

The Ohio Chapter of the Alexander Graham Bell Association for the Deaf and Hard of Hearing will hold its annual meeting in Columbus, Ohio on Saturday, October 27th. The keynote speaker is Donald M. Goldberg, Ph.D., a very well known and published Cert. AVT and Co-director of the Hearing Implant Program at the Cleveland Clinic. You will not want to miss this event!

In addition to Dr. Goldberg's presentation, the afternoon will offer two panels. A panel of professionals will answer questions you have always wanted to have answered! In attendance will be an otolaryngologist (CI surgeon), audiologist, teacher from an oral school, and a developmental/behavioral doctor. In addition, there will be a student panel discussing what life is like in the mainstream with a hearing loss.

I love the AG Bell Association! Their mission is to promote spoken language for the deaf and hard of hearing and advocate for listening, learning, talking and living independently with hearing loss. I don't think that this organization could have defined my vision for Drew any more clearly! Their current "Hear from the start. Talk for a lifetime," campaign is designed to help children with hearing loss with early identification, intervention and appropriate amplification. It is a truly wonderful organization.

I have become actively involved in the Ohio Chapter and am helping to plan the annual meeting. I have really enjoyed working with other AG Bell members throughout the state planning this meeting. So, I expect to see many of my friends, in life and on line, at the annual meeting in October! If you have any questions about the annual meeting or would like to know how to register to attend, please leave a comment and I will contact you with registration information.

Sunday, August 26

Booth Test

Oh, how I am getting used to "the booth". Four grey, padded walls where all sound in the world is blocked out and you can hear every little noise or breath you take. I think in some ways Drew is getting used to "the booth" too. A little too used to it, to the point he just ignores everything that happens in it!

Drew immediately alerted to his name at 35 dB. Then the audiologist attempted some tone sounds. Drew did not like them at all and refused (and I mean refused) to alert to them. He kept his eyes intently focused on his toys and looked like he was straining not to show any reaction to the sound. The face he was making was so funny!

The audiologist decided that maybe Drew needed a little incentive for responding to sound, so she decided to say his name again. When Drew immediately alerted, she rewarded him by setting off a dancing elephant that lights up and spins round and round. Drew hated it! Seriously HATED it. He started crying his "Mom, I am super scared cry," turned around and climbed up me as fast as he could, hanging on for dear life. It took me several minutes to calm him down and at that point he had no interest in the remaining testing.

The audiologist felt like Drew was definitley hearing at 40 dB's across all frequencies, but with him being so uncooperative we really don't know exactly what he is hearing with his current program from a technical standpoint. Drew's Dad and I, however, feel very confidant that Drew is hearing very well. He responds so well to environmental and speech sounds on a daily basis. Just tonight Drew consistently responded to the sound of a door about 15 feet away being opened and closed. I don't think seeing Drew respond to sounds will ever become "habit". I think these moments will remain a special reminder of just how blessed we are that we were able to turn on Drew's ears.

Sunday, August 12

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.

Thursday, August 9

How Lucky is Drew?

He's pretty lucky. It's true: Drew is blessed with the best big sister a little boy could ask for! She talks to him constantly (actually, she talks constantly to anyone that will listen, or if no one is listening, she'll talk to herself!). She loves to "help" put his "C.I." on each morning and after his naps. She will practice the ling sounds with him. "Ahhh." "Eeee." "Oooo." It is just precious. As this journey continues on, Drew's Sister is going to be a large part of each of Drew's successes.

She is only 2 years old, but her language is amazing! Just tonight she put 10 words in a sentence, "Me dance to mucus (a.k.a. music) while Daddy get me tiny water." The other night she said, "Me no like peas very much Daddy!" She has some grammatical issues, but hey, she's only two!

Here is Drew's Sister singing her "A. B. C.'s":



Here is Drew's Sister counting to 10:

Wednesday, August 8

Responding to His Name

Drew is continuing to amaze us everyday. This journey to hearing is so exciting. We have turned Drew up to P2 which is an ADRO program. Drew's audiologist plans on using this ADRO setting for all future maps, as it really helps children by equalizing both loud and soft sounds to a comfortable listening level.

Drew continues to have multiple therapies weekly (a big thanks to Gamma who chauffeur's him around Columbus to all of his appointments while Mom and Dad are off at work!). During therapy it has been noted that Drew is responding nearly 100% of the time to environmental sounds of all decibels. He's even responding about 90% of the time to speech sounds. Truly amazing.

Here is some recent video. Note the loud environment - clearly not the best listening environment, but he's doing well. Also, note the ignoring he does after he responds the first time. Looks like he is learning from his sister.

Thursday, August 2

Drew's Therapy Status

If you've been following along with us during the last several months, you know that even though Drew now has his bilateral cochlear implants, we all have much work to do. Right now, his work includes several therapy sessions per month with professionals, and many with the "I'm not an AVT, but I play one on TV" Drew's Mom and Dad.

Earlier this week I took Drew to his therapy session and arrived almost 30 minutes late due to idiotic reliance on Mapquest Driving Directions. Usually they're perfect, but every once in a while you end up in the middle of nowhere.

We could not do as much practice as we would have liked, but Drew did respond to all the "Ling" sounds at close range and was localizing where the sounds were coming from (i.e. turning to the right or left depending on where the therapist was speaking from).

One interesting thing that I learned was that hearing develops spatially from side to side before above and below. For example, when the therapist rang bells from below a table where Drew could not see them, he made an expression which seemed to say "I hear something, but I have no earthly idea where it is!". When the bells were rung above his head he indicated the same confusion. Meanwhile, ringing them to his left or right resulted in an immediate swivel of the head toward the sound.

I feel he is doing very well at this point. I don't really know how to judge whether the map is finely tuned or not, but there is definite indication that he does get a great deal of hearing benefit from the implants, and we look forward to more leaps and bounds in the coming weeks.

Friday, July 27

Mapping is All Greek to Me!


Drew had his third mapping appointment yesterday. Before they began to update his map they put Drew in the sound booth to see what he was hearing currently. Depending on the frequency, he was hearing somewhere between 25 - 40 db! Can you believe it? Just one month ago a jet engine could be roaring right next to him and he would not have heard it. Now he is hearing within the speech range. Unbelievable! I sat in the sound booth with him ready to cry each time he would turn and look in the direction of the sound. I held it together, but I can't help to get emotional when he hears things that he has never heard before!

There was a audiologist from Cochlear at his mapping yesterday. It was simply coincidence, but nonetheless, very exciting. She looked over his map and made some suggestions to his audiologist on how to tweak his map. We are working to make sure that each of the 22 electrodes is programed for optimal hearing on all frequencies at about 15-20 db.

One thing that has been really interesting/perplexing to his audiologist is that his right ear requires a much more powerful map than his left ear. This can happen as a result of scaring in the ear, normally from repeated ear infections. The reason it is so perplexing is that Drew has never had an ear infection and does not have fluid in his ear. It was nice to have the Cochlear audiologist recommend turning up the power on the right ear to ensure he is hearing all frequencies the same. I think it made our audiologist more comfortable with her decision to turn up the power on his right ear again. It also made me feel better about his map in general. It is really nice to have a "second opinion," especially in an area that is so complicated.

During the whole appointment the audiologists (there were three total) were talking about NPT's, hugging the "T" line, impedance levels, the list goes on and on. I felt like I was in a room where everyone was speaking a foreign language. It makes it really hard on a parent when you want to know everything that is being done to your child so you can understand what you need to do to help, but everyone except you speaks a different language. As far as I was concerned, it was like they were all speaking in Chinese and I only understood English! I think I need to go back to college and take some classes on this stuff so I can understand it better! Now if I only had TIME to do that...

Drew is now on his most powerful map ever and is responding to just about every sound around him. Last night the most amazing thing happened. We were all four playing together, working on language and doing some of our "homework" from therapy. Drew crawled over to his sister's table and chair set and was trying to pull up on the chair. He is getting really close to being able to pull up on his own, so I watched him and then helped him just a bit. Once up, he was able to stand and hold on to the chair all by himself. That's not the amazing part. He stood there for a while not moving his legs or struggling to remain standing. It took me a minute to figure out what he was doing. Drew had found that there is texture on the seat of the chair. He was standing, raking his nails over the texture and LISTENING to the sound his fingernails made when he drug them across the texture. Can you believe it? It was the most amazing moment and made me cry. Even Drew's Dad had a little sniffle at that one!

Saturday, July 21

Makin' Some Noise!

What a difference 23 days can make! Drew is making new noises daily. This journey is so amazing and we have only just begun.

In the last 23 days the loud, screeching sounds that Drew made before his cochlear implants have completely disappeared. Now our home is filled with beautiful "singing" and blissful laughter! It is so pleasing to our ears. He will sit on the floor for half an hour singing. I think that he can hear himself doing it, so he is getting used to his voice. It is so much fun to just sit and listen to the little noises he is making.

Drew is even mimicking sounds that we make, such as "ahhhh", "mmmm" and even raspberries. Whenever he is sitting on the floor not looking at me, I will make the raspberry sound and he will mimic it and turn in the direction he heard the sound coming from. He'll give me a cute little grin, as if to say, "Yeah, Mom. I heard you!" It is truly amazing! Whenever he is eating, we narrate the whole experience. It goes something like this:

Daddy: "OK, Drew. Open your mouth. It's time to eat some bananas!"
Drew: Opens mouth as wide as he can and sucks every bit of banana off the spoon. (He's a hungry and growing boy!)
Daddy, rubbing his belly: "Oh, Drew. Banana's are yummy. Yummy, mmmmm."
Drew: "Mmm, mmm"

Amazing!

We are enjoying each and every day with him - and his sister. When Drew's Sister was born two years ago, I don't think we took the things that she did in developing language for granted, but I know that we did not have an appreciation for how children learn to communicate through hearing. When Drew was born with profound hearing loss it gave us a great understanding of this amazing process and for that I am forever grateful. Now everything that both of our children do in developing their communication is truly special. Just yesterday, Drew's Sister (who is two years, three months old) broke out the "Why?" question. Drew's Dad and I have heard it about one hundred times since then and we will continue to hear it for years to come. And even though it can be irritating to hear, we are just so thankful that she is able communicate with us!

Monday, July 16

Drew Can Hear The "Ling" Sounds (Video)

Drew is consistently moving through his different "maps" and is doing well. Yesterday we tested his hearing ability by having Drew's Mom sit behind him and make the "Ling Sounds". These sounds are 1) "aaah", 2) "oooh", 3) "eeee", 4) "mmmm", 5) "ssss", and 6) "shhh", and are supposed to represent the sounds that one needs to be able to detect to hear speech properly.

Here is Drew hearing the "Lings":





We were excited to see that Drew clearly responded to most of them and seemed to respond to the others when the sounds were made at close range. We will keep moving farther and farther away to monitor how well he is hearing, but this is a great start!