Leader of the Pack...

Life lessons occur on a daily basis. Sometimes they sneak up and surprise us. Last Friday, Bella's swim coach handed her a plaque. It had been awarded at the season end swim banquet that we had been unable to attend. It was the leadership award for her last swim level. Her current coach said, "Coach Brenda's exact words were, "She's the best listener, even though she can't hear half the time in the water!"

Receiving the leadership award was such a great lesson to Bella. Does she have the fastest times? Can she swim the most lengths? No, but as he coaches have said in the past, she is always willing to work really hard and give it her all. Life isn't always about doing the best. As I have often told Bella, a strong work ethic often trumps final results. At some point everyone encounters a time/event where success is not easily achieved. For those without a strong work ethic, it is more difficult to power through the tough times. Having things always come easily is not always a blessing.

Bella was so proud of her plaque. She wanted Erick to hang it up right away with the rest of her swim ribbons.

I hope it is the first of many hard earned successes for her!

I See the Light...

It's beginning to look a lot like Christmas at the Rowe's. With less than two weeks before the big day, the list of chores seems to be endless. A couple of things were checked off the list this past weekend; tree bought, holiday picture taken, and some decorations put out.  I am not sure why I dislike putting up decorations. Perhaps it is because they are up for such a limited time. About 2-3 weeks in our house. This year Harry was going to help by decorating the tree. He had just finished with all the lights and ornaments when CRASH. Down it came, with water spilling out everywhere on the wood floor. As I RE-decorated the tree on Monday there were two words I couldn't get out of my head...Bah and Humbug.

While Harry was at home decorating the tree with bells and stars, Bella had her turn at being a real star. Last week we were notified that she had been chosen as the winner of a contest for Disney on Ice. She would light the lantern during the show and give it to Flynn and Rapunzel during the show. So much excitement. Sunday was the show and her part went great! She performed her lantern duties in front of a crowd of about 3,000. Here are some pictures. Do to the stage set up, we could only get the back of her head.

The Disney on Ice show was really entertaining. The costumes were great and it was fun hearing music from Disney movie favorites. Becca came along and she kept pointing out that Disney on Ice is where professional ice skaters end up if they don't make the Olympics. Well, I don't think it would be such a bad job.

During an Alice in Wonderland scene, we had a fun "implant" moment. The "cards" were on stage with the Queen of Hearts and there was a kind of clicking sound as the cards went past each other. Bella looked at me and said, "Mom, what's that sound?" Before I could answer, she replied, "Oh, I know. It's the cards shuffling themselves." I was pretty impressed both because the clicking sound during the show was pretty obscure and hard to hear amongst the music playing and also because she really hasn't heard the sound of cards shuffling on a regular basis. We are not really card players, but I know she has played some with grandparents and other relatives. Ahh, another thankful moment for her cochlear implants...

Now with only a little over a week away, there is lots to be done before Christmas. Presents to wrap, cards to be sent, more gifts to buy, and food to cook. Right now though I am going to take a minute to relax, breathe deeply and remember that Christmas only comes once a year...Thank goodness!

It's Not Easy Being Green...

Learning to appreciate your differences is never easy, at any age. It can be said with certainity that some people never learn to value what makes them different from others. They become the "yes men" of the world. Always terrified to let people get too close for fear that others will see what makes them unique and special. Blending in and just existing is always easier than standing up and being seen for who and what you are. Not very interesting to be around, but much easier. As a parent, I feel it is my job to help my children appreciate their quirks and essentricities. It's what sets them apart.

Last week I watched as Bella played in the wet sand with her implants off. My heart broke a little as I watched her play. Why? Because she is learning that sometimes your differences set you apart from others, literally. Now for the backstory.

Bella was at girl scout camp in the water, swimming and playing with the other girls in her group. She didn't have the implant/water set up we use for swim team because it is a hassle to put together and as her unit leader I couldn't spare the time to get it all set. Besides swimming at camp was only 20 minutes so I thought it would be fine. Anyway, one of the teenage helpers for our group decided to play a game with the girls in the water. She tried to tell Bella the directions, but it was tough since Bella couldn't hear. Finally, Bella said, "I can't hear you without my implants." That comment in itself was pretty telling. Usually Bella fakes her way through conversations if she doesn't have her implants on. She is a great lip reader, but even so things get missed. I guess learning how to play a game and lipreading all the directions was a bit too difficult. So the teenage helper brought Bella back to play by the sand since she couldn't hear the directions for the game. The game the group finally decided to play was "Marco Polo." You know, the one where one person has their eyes closed and yells "Marco" and listens for the others to say "Polo" so they can tag someone else it? Well, that is definately limiting if you are deaf.

After it all happened, I spoke a little with her about how sometimes it is hard to be different and how some people's differences show more than others, but we all have them. I also told her it takes a lot of strength and courage to own your differences. I'm sure it is a conversation we will continue having, now that she is getting older and more self aware.

The rest of girl scout camp went great! She made lots of new friends, played games, did crafts, and ate yummy snacks. The theme this year was "Reality Twin Cities" so all of the activities were based on reality shows like Biggest Loser, Minute to Win It, Project Runway, etc. The highlights for Bella were the Cake Boss craft/snack where a team of 4 girls got to design a cake and then they got to eat the whole thing themselves. Most didn't finish theirs, but the idea of eating a whole cake was appealing to all the girls. Bella also liked climbing the rock climbing wall and of course singing all the songs. Paddling a canoe was also a big hit. I did let her keep her implants on while she was in the canoe, but did silently pray that it did not tip over.

We missed the last day due to puppy pick up. Details to follow...

Amazing...

What do you get when you put together two waterproof diving bags, a swimmer's ear band, a swim cap and cochlear implants? Pure magic...

Tonight, for the first time ever, Bella could hear in the water while swimming. Using her back up implants, we used the set up that many other cochlear implant recipients. have used. We secured her two back up processors in military grade diving bags (aLokSak bags) with a swimming ear band to keep them in place, and covered with a long haired swim cap that allowed for extra room on top. It was a bit of a process to get all the pieces in place and I have to say when it was all said and done she looked a little like a being from another planet with a big bumpy head. But I knew the value was right around the corner...

There are moments that only parents of other special needs children can truly understand. I felt like tonight was one of those times. A lot of the other swimming parents were excited by her being able to hear in the water, but it was different. For me, it was truly like she had been activated again. I had butterflies in my stomach the whole way to swimming. While I didn't shed tears during her swim team practice, my eyes were dewier than usual. My level of emotion was heightened and I was on edge as I watched her experience sounds for the very first time.

Her coach signaled to me several times during practice with the "thumbs up" signal and other signs about how pleased she was with Bella's ability to hear in the water. She was able to correct Bella's positioning with simple words like "flatter" or "straighter arms", on the spot. The result? Improved technique in just one evening!

So what did Bella think? Well, it was a lot for her to take in. She was surprised about the examples the teachers gave about how to do things. She said they told for one stroke to pretend she was climbing a ladder. Before she could only watch and gain some instruction by lip reading. Having the actual auditory instruction made a huge difference. Another surprise? Bella said, "You know when you blow bubbles under the water? Those make NOISE!" The little things we take for granted. She was also surprised that you couldn't hear people talking above the water when she was underwater. She thought it would be quiet, but she thought it was something she would be able to hear. Finally, the splashing of her arms in the water as she swam was louder than she expected. I'm sure she will discover more things over time.

Was I nervous to try the "waterproof" set up with her back up processors? Yes! But I was happy when I took them out of the bags and their was not one hint of water or moisture. Bella hearing in the pool? Well that was priceless....

Upgrade Central-Bella 4.0...

Yesterday was an exciting day for Bella. She received the latest and greatest in cochlear implant fashion; upgrading her Nucleus Freedom processors to the new N5. She has the N24 internal piece (for all of you CI tech geeks out there). Previously she has had the sprint processors, the 3G and the freedoms, so this was upgrade #4.

The biggest change in the upgrade is the new size. As you can see from the pictures, it is quite a bit smaller and thinner than her previous model.

It also comes with a remote to trouble shoot issues with the processors and change programs. It looks like an ipod, if you ask me. I'm not sure how often we will use the remote. It seems to be a tool more likely used by parents of smaller children to check on things and so they don't have to mess with the small buttons on the processors themselves while their toddlers are running around.

We were going to wait until this summer to go get the upgrade since we have to travel 2 hours to Mayo Clinic for the appointment, but Bella has been having some issues with her hearing lately. Nothing super significant, but enough to know we better bring her in now vs. later. Her teacher at school mentioned in passing that she didn't seem to be hearing as well in the classroom. She explained that in the past she could call Bella from across the room and she would respond. That had stopped happening. Also, Bella was asking for clarification more on directions. Another sign. After hearing that, I did recognize that Bella had been confusing sound alike words more often in recent weeks.  The word "ham " might sound like "hand" to her. Subtle differences that she used to have no problem hearing. When I asked her about her hearing, she did say things had seemed softer lately.

During her Mayo appointment, we discovered that her MAP (cochlear implant programming) had changed, which accounted for her poor hearing. It didn't look like it changed that much on the screen, but hearing is a very complicated sense. This was illustrated to me during the session when the audiologist was adjusting Bella's MAP's and then she did the Ling Sounds to check her hearing. Bella mixed up the "oo" sound with the "mmm" sound. The audiologist was not phased at all and said that happens a lot when adjusting MAP's for a CI. With a slight click of her mouse, she adjusted one electrode on the computer screen and fixed it. She said "oo" and "mmm" were basically the same sound with a slightly different pitch. I have to say, I was pretty amazed!


There have been many reports that the N5 upgrade is mostly a cosmetic upgrade- meaning it is smaller and  as her implant surgeon put it "more sexy looking", but that it didn't really improve sound quality. Well, I'm not sure if it is because we had Bella's MAP adjusted at the same time or not, but she claims she hears quite a bit better with it. At a lacrosse game yesterday, she said the wind sound was a lot better.  In the past, Bella had always complained about not hearing well in wind. Now she says the wind is much quieter and she can hear people much better over it.

After the new processors were programmed and her back-up freedoms were adjusted as well, she went into the sound booth for some testing. Her report listed her as an "excellent performer" with cochlear implants. Here's her test results with both implants on:

AZBio-C Sentences in quiet list 13-100%
BKB Sentences in Noise (paired lists 9 and 10) 4.5 db SNR

In layman's terms here's the scoop. When hearing without noise, Bella hears extremely well. She got all of the sentences correct using the hardest list of sentences Mayo has. In noise, she is close to hearing as well to hearing peers her own age. A typical child needs the speaker to be 1-2 decibels higher than the background noise in order to get sentences right 50% of the time. Bella needed the speaker to be about 4 decibels higher than the noise to get the same results. A typical child with cochlear implants needs the speaker to be about 8 decibels higher than the noise to achieve 50% accuracy and a typical adult with cochlear implants needs the speaker to be 11 decibels louder than the background noise.

Here's some video of Bella's sound booth testing:

Technology is changing so fast, I wonder when Bella version 5.0 will arrive...

I Believe in Miracles...

I have noticed an unsettling trend in the media. It seems that almost everyday a "miracle" occurs. The "miracles" can range from a homeless man with a great radio voice being discovered through youtube to a contestant on American Idol being saved and allowed to compete another week. Now I know in our society of 24 hour news cycles, there is a lot of pressure to make stories exciting and a bit over the top to keep viewer interest and yet...

Perhaps it is the Easter season that has caused me to notice this trend. There is a lot of talk of miracles in church at this time of year and somehow those miracles seem to carry more weight than "if the price of gas came down anytime soon," which I also heard would be a miracle according to a CNN contributor.

Big news of the week: The new cochlear implant upgrade is available for Bella. While some say it is only change in appearance (quite a bit smaller and thinner) there is also research that states it improves overall quality of speech recognition for recipients. We did go ahead and order it through Mayo Clinic, but I am always nervous about insurance until we actually receive it. By all my calculations, insurance should pay for it, but for anyone who has dealt with the wonderful world of insurance companies, you understand my hesitation and uncertainness. Anyway, if we do receive the new upgrade, we hope to be able to keep Bella's current processors as backups. And if we do, I have a plan. For years I have read about parents who have used diving bags, food saver machines and water tight balloons to allow their children the ability to hear while swimming. The key is to provide a waterproof environment for the cochlear implant. I have never risked this with Bella's implants. I mean if something goes wrong and the implant gets wet, that's a big "whoops". And expensive! But with all of the swimming Bella is doing and the research I have done over the last few weeks, I am willing to give it a try if we have a back-up to spare. Bella does a great job of lip reading and keeping up on her swim team and yet...Just imagine if she could hear all the instructions the teacher gives; all of the counts that help develop timing which is so important to the sport. Well I dare say it would be a mir...well, ok maybe not, but it would be super cool!

Let the Silence Be Heard...

Last week Bella's class put on a class talent show. If I may be completely honest and upfront, I am not a huge fan of the talent show idea. They are a bit too much like "Toddlers and Tiaras" for my taste. Perhaps it was because as a child I was stressed out by them. I mean after you have done one or two, you tend to find out that the backhand spring you can do is cool and all, but when put up against the kid in the class that can sing an operatic aria, it just doesn't hold up. Ok, too much about me...

Anyway, it was a bit of a struggle to find a talent for Bella to share with her class. Her "thing" is swimming and that's hard to show outside of a pool. So we came up with the idea to have her bring her ribbons and trophy that she has received from swimming. She was super excited. The talent show went off without a hitch (or an aria, but believe me there were some close contenders) and Bella had a lot of fun.

So here's the funny part and what became an Oprah like "A-ha" moment for me. When I picked up Bella up from the Lifetime play area the teacher said, "She is such a hoot! She was showing us her (implants) and then she started showing us how she can lip read. We were all taking turns standing pretty far away, saying things, and then she would tell what we said. The kids loved it!" When I picked her up she was excited to repeat of version of the story that I had just been told. She went on to further explain that at first the kids were standing pretty close and they thought that was why she could do it, but when they moved far away, she could still do it! She was super proud and it sounds like the kids were amazed. A bit of a "rock star" moment for her amongst the Lifetime play area crowd.

Later, Bella was telling the story again and Harry was listening. His comment? "She should have done the lip reading thing for her talent show." And there it was. In that moment I realized that true talents are a part of who we are. They can't be manufactured and produced for a talent show display. All that searching for something to share, when a true talent is often shared on a daily basis without pomp and circumstance. Although when there is some pomp and circumstance surrounding the talent, that's pretty cool too...

What If...

So last night a topic of discussion was raised by Bella that had never been brought up before. As usual I was moving way to fast, trying to do too many things at once, running the risk of errors and mistakes with every step. Bella and I were at swimming. As we got ready to leave the locker room, she noticed that I had forgotten to put away her implants. She looked at me with concern and said it would be "very bad" if we lost her implants. She said, "I would have to learn sign language or lip read for the rest of my life." I guess I have told her how expensive they are so she didn't even consider getting replacements in her scenario.

Want to know what her biggest cause of alarm regarding losing her implants? "And Mom, I would never be able to do pinatas anymore. You know they put the blindfold on and stand behind you to give directions. I would never know what they are saying."

Interesting concern and one I had never considered...

There She Goes...

Ah Saturday. A perfect day to sleep in, relax, take it easy, with no real place to have to be. Not in the Rowe household this week. Harry started it off with guitar lessons, followed by a whole load of activities that Bella was participating in. First she had clay camp, followed by a girl scout cookie rally, and rounding out the day with a practice swim meet.

Bella has been doing clay camp for the last few weeks now. She really enjoys it, even though she has figured out that working with clay is not the easiest feat. Still, she is determined to work hard and improve. Above you can see her clay projects. The teacher has been great about being positive and helping the kids learn new techniques every week. This was her last week for the session, but I think we will do it again in the Spring. Bella really enjoys arts and crafts and she doesn't get a lot at school.

On to the Girl Scout cookie rally. This year cookie sales are being handled a bit differently. Instead of taking orders, the cookies will be ordered before hand and then sold door to door. I'm not sure how this will go. Yes, it was a pain to take the orders first and then go around later and deliver them, but at least no one was stuck with extra cookies. For out of state relatives and friends, they can donate money for cookies that will be given to the local food shelf at the end of March. For anyone interested in doing so, please send me a message and I will be in touch. The rally was fun for the troop and all the girls got to play games about the cookies and then have a sample of each one.

We ended the day with a practice swim meet for Bella. Up until this point, we have just been concentrating on her sessions during the week, but with her recent improvements, she decided she was ready to try a practice meet. For being a practice meet, it seemed pretty official to me. Parents weren't allowed on the pool deck, the times went up on the timer board, the kids started on the blocks, and they even had the touch-pads in the water. All of these things were new to Bella and pretty exciting. Before the meet we had discussed what events she wanted to do. She had decided the freestyle and the backstroke. In this practice meet it was only one lap of each stroke (freestyle, backstroke, breaststroke, and fly). The kids were divided into groups of 6 by their ages. The cool thing about the meet was that everyone got a ribbon (1st-6th). As you might expect, Bella (motivated greatly by receiving ribbons) decided to try all the events. I neglected to write down her times, but she came in 4th place in the backstroke, (video below-she is in 3rd lane from the left) 5th place in the breaststroke, and 6th in the other events. It was a little complicated for her since she had never started on the blocks before. Also, she was a little delayed starting each time because she had to look to the side for the hand signal rather than hear the whistle. I know at some meets they have a light across the lane to look at as a starter, but since this was just practice, they didn't have that as an option. The coaches even added an extra event at the end, the 50 free. Did Bella do it? What do you think? You can count her ribbons below and find out the answer. Today, Erick and Bella are headed to Office Max to get a bulletin board for her room so she has a place to keep her ribbons on display.

Well Saturday may not have been relaxing, but it sure was rewarding...

Ode to Joy...

There are some things in life that will never get old...One of them is seeing your deaf child sing and dance with their hearing classmates. I am so grateful for Isabella's cochlear implants and the opportunities they afford her everyday. Technology is a marvelous thing...

Yesterday, Bella had an end of the year fiesta/music program. She participated in a short Spanish skit called the "14 Mice". She was a rojo mouse as you can see from the picture. With Bella being homeschooled for part of the day, she doesn't take Spanish as much as the other kids in the class, because it is usually held in the morning. Learning the lines for the play was very challenging for her on several levels. First, she is not that familiar with the language since she doesn't have the class regularly. Second, her memory issues make it hard to memorize things, especially when they lack context. Finally, her hearing loss makes it difficult to clearly understand the Spanish pronunciations of words. Still, with all of those barriers, she put her whole heart into it! I am so proud that she does not shy away from challenges and instead embraces them and puts in a full effort. It is a skill that will carry her far in life...

In addition to the Spanish play, the class also sang songs from music class. Music and singing has always been one of Bella's favorite activities. I found it so appropriate that one of the songs the class sang (as a round) was Ode to Joy. Watching it put "joy" in my heart! I have attached it and hope it will put some "joy" in your day. Bella is the little red mouse in front with the floppy ears and red shirt. EnJOY!

Seasons of Love

On January 29, Bella celebrated her 8th birthday. Every year I am amazed about how much she has been through and achieved in her short time on earth. As any of you with special needs children know there are many emotions you experience over the years with them.

It starts with the initial pang of uncertainty and doubt when faced with the initial diagnosis. Will I be able to handle this? Am I strong enough to make the right decisions for them? How will this affect the rest of our family? This time reminds me of Winter. The world feels cold around you and all you see for miles is the snowy path that seems slippery and unsure. Hearing that Bella had moderate brain damage after her illness and that she might never walk or talk, left me on the floor gasping for breath. Soon after, we learned the illness had also left her with profound deafness. It was as if a wintry blizzard had overtaken my mind. All I could see was a complete whiteout. I have learned to cope with this season by continuing to put one foot in front of the other even when the ground feels so unsteady that you are sure it will crumble. Making forward progress is important in order to move on to the waiting seasons.

Just as in nature, when you are sure that the rest of your days will be filled with icicles and freezing temperatures, it is then that you hear the faint sweet song of a robin. At first, you question if you really heard anything at all or if it was just wishful thinking. I can remember hearing Bella say "kitty" for the first time and thinking I was imagining it. We worked for months when she was a tiny infant to have her roll over on her right side. It was so difficult for her coordinating her muscles on her right side due to the brain damage from the meningitis. Then one day she did it! Spring is all about hope and renewed faith. It is truly wonderful to see hardwork from therapy pay off in a miraculous moment you feared you might never see.

After the first buds of promise come in Spring, Summer comes close behind. Full flowers emerge and the world is green. It is easier to think about possibilities and also how to attack challenges when the sun is shining warmly on your face. Progress is being made and while there are always some challenges that arise, they are not overwhelming at this point. I think back to when Bella began walking with unsteady steps around 16 months. She was extremely unbalanced, partly due to the large cochlear implant body worn processors that swung on either side of her body with each step she took. The progress she was making with receptive and expressive language and the simple fact that she was WALKING, made it easier to swallow the difficulties she had; falling every few feet. Then you wake up one morning and notice a slight chill in the air. Change is coming once more...

Of all of the seasons, I think Autumn, is the most beautiful. It is a time of reflection on what has worked best and what didn't work over the last few months. Is more therapy needed to reach another level? What other challenges have appeared now that the child is growing older? Schedules are rearranged to fit the needs. Reviewing past memories produce some that are a beautiful like the gold and orange leaves in the trees, while others remain green and dull. In Bella's case, her implants are checked in the Fall to ensure they are working properly and also reprogram them to achieve the highest level of sound quality. There is also another kind of reflection that sometimes happens as you review the previous months. Seeing another child the same age as my child with no disability has at times put a cold shiver up my spine, if only for a moment. It is difficult to see how easy the monkey bars can be for another little girl or how she doesn't struggle to hear her Mom call her in the loud, noisy playground filled with lots of noise. Like the day warms up after a cool morning in Autumn, I push this chill away from my soul. Focusing on what my child can't do will not produce the confident child I desire. Yes, she has challenges, but it is my job to teach her how to work around them to the best of her ability not dwell on them.

Then before you know it the winds have changed once more and the chill that was only lasting in the early morning has crept in to last the whole day. Another major obstacle has been placed in your way. One that you were not expecting and you are not sure you will be able to handle. One cool February when Bella was two, we were told one of her implants had become infected and would need to be removed. It meant surgery to remove it and surgery a few months later to put it back in after the infection had been treated. Again, it is time to take a deep breath, walk forward, no matter how slow. It is the forward progress that is important. Winter is back now, but Spring will be here soon...

Happy 8th Birthday Bella! You are amazing!