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.

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.

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.

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.

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!

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.

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!"

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!

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!

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.