Thursday, May 26, 2011

Whatever Will Be Will Be...

Letting go...It's never been easy for me. Accepting the things I can not change and the wisdom to know the difference has been a constant struggle. This week I have been given another opportunity to practice.

Let's start off with the events of the week. Last Sunday, Bella had another swim meet. It was her first time using her implants during a meet, so her coach took extra time to help her understand the whistles which direct the swimmers on when to start. She was pretty tired since she had gone to swimming 4 times last week. Still, she is making continual progress. Her 25 free time went from 53.81 on April 30 to 47.19 on May 21.

On Monday and Tuesday, Becca had her choir concerts. It is always fun to see the talented kids in the Minnetonka music programs. In the Spring, they do more contemporary songs than for the Winter concert. They even had two songs with beat-boxers. Still, I wish there was a way to shave the time down. Over two hours long is quite a commitment.

And that takes us to yesterday. When Bella woke up yesterday, she announced, "Mom, I can't walk!" I must say this had me flying into her bedroom to see what she meant by that unsettling statement. And this is what I saw.

Truth be told, this is what I saw later in the day. After I sent her school and told her, "just take it easy and don't run around a lot." I know, super bad Mom award, right? Honestly, it wasn't as bad in the morning, from a visual standpoint. And in an effort of full disclosure (and an attempt to appease my guilt) the event that caused this (tripping on the way to the bathroom) occurred under Dad's watch the previous evening while I was attending said choir concert. What did she trip over? Well, that unfortunately, would be the basket of clothes I had not put away in the hallway upstairs...

So the verdict at urgent care? Bella has a broken pinky toe, right above the growth plate, which makes it more serious. So here is the picture for the next few weeks at our house.

Oh, and she did it on her left foot, which was not the best case scenario. Due to her right sided weakness, using the crutches on her right foot is not the easiest for her. I am a little worried that using the crutches is going to add more injuries. The good news is that she can still swim, since the splint is removable. The bad news? Well that yearly Farm field trip that she was supposed to go on (and Erick was supposed to chaperon) will not be happening this year. There's just too much walking around. Erick is not really broken up about that part.

And so I have to accept this new difficulty for Bella, whether I want to or not. Wishing I had moved the basket of clothes is something I can not change. She's a kid. Things like this happen, I know. See, there's a glimmer of hope that I am gaining the wisdom to know the difference...

Thursday, May 19, 2011

It All Started With a Big Bang...

Unsettled. In one word, that has been our family the last few weeks. As we head into the final countdown of the school year, the seams of our regular schedule begin to tear, and we are thrown into the abyss of daily chaos. Where to today? A end of year art show? A Spring choir or orchestra concert? A bridging to girl scout event? There is no rhyme or reason to where we need to be. I am good about writing everything down in my planner, but when things get so crazy, I am not so good about checking it. And so last week, as I was taking a minute to breathe, the orthodontist office called wondering why Harry had missed his appointment.

Last Tuesday, Bella spent the night at the Minnesota Zoo sleeping "with" the dolphins, "with" meaning on the hard concrete floor next to the dolphins' swimming tank. It was a special treat for the 3rd graders in an attempt to get them more independent as they move up to Upper Elementary next year. I had planned to chaperon (I know that spelling looks wrong, but I looked it up) the trip to help with her implants, but the teachers really wanted no parent chaperons so the kids could feel more independent. So, I met with her teacher to review the basics of turning on and off Bella's implants and that was it. Bella is a very independent little girl, so she was thrilled. It was way harder on me. By 5pm, I was in a fog of what to do with myself. Having only Becca and Harry felt so odd. It was in that moment I realized how much easier it was to have only 2 children, especially when those two children are getting so big. After I shared this with a friend, they said when you are feeling overwhelmed with your life, you should add another big thing like a foreign exchange student or watch someone's dog for a few weeks. Then when they go, your life feels so much easier.

On Friday, we attended Harry's art expo at his school. I have to say there was so much cool art there! It always fascinates me when people are good at art because no matter how hard I tried in school, I could never make my art projects resemble the sample, or really anything for that matter. Art is most definitely not my thing, which is apparent in the stick figures I still draw. Harry had his mosaic up in the art show.

Yeah, it was the same mosaic that nearly broke him (and me) when he was doing it. See previous post for more details: Harry's mosaic A lot of pieces were for sale, but not Harry's. He said it was "priceless" due to all the work he had put in. I have to agree...

And so we are gearing up for next week when Erick will go to a farm school trip with Bella, Harry and Becca will participate in school music concerts, and I will try to fit in some homeschooling for Bella which is getting harder and harder with this crazy season of activities/field trips.

 In just a few short weeks, Harry will be leaving to travel to Costa Rica to spend a month with his grandparents. I can't decide if I should adopt a dog, get a foreign exchange student or just read a book during his absence...

Tuesday, May 10, 2011


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....

Monday, May 9, 2011

All I Ask of You...

Mother's Day Eve dinner outside at Lord Fletcher's, sleeping in, breakfast in bed, Phantom of the Opera, an early evening workout, capped off with Star Jones getting fired from Celebrity Apprentice...Mother's Day 2011 was a great day!

Truly the highlight was the Rowe family attending Minnetonka High School Theater Department's Minnesota premier of "The Phantom of the Opera." Now I hear you skeptics saying, "You went to see a high school play for Mother's Day? And your child wasn't even in it?" Rest assured, this was no ordinary high school play and Minnetonka Theater does not have an ordinary high school theater department. A few years ago they did "Les Miserables" and it was reviewed by local credible theater critics as being "Broadway worthy." It even won the right to travel to Scotland to be a part of the Edinburgh Fringe Festival.

Anyway, Phantom had a lot to live up to. But in true Minnetonka Theater style it surpassed expectations. The set was spectacular with the necessary chandlier and the eerie Phantom's underground lair. The singing was superb with the whole cast having wonderful voices. The female lead for Christine has been studying opera for the past few years. In preparation for this role? Who knows, don't underestimate Minnetonka Theater's department!

The whole family enjoyed the show, but as you can see from the picture, Bella was a little timid around the Phantom. Hey, who wouldn't be?

The only problem of the day was me worrying about Bella's implant batteries running out during the show. I had heard the new N5 rechargeable batteries should last 2 days, but you never really know until you try it out. The problem was that I didn't pack her back up batteries in case they ran out. Great news was that they didn't run out even with the loud music. When I got home and checked how much battery power they still had, one had half left and one had 3/4 battery life left. We might be able to even get 3 days of battery life out of her new rechargeables.

Great job again, Minnetonka Theater!! Bravissimo!

Friday, May 6, 2011

Honesty is Such a Lonely Word...

With Mother's Day right around the corner, I feel a bit blasphemous writing this post. Walk into any store and you will usually see Mother's Day banners printed in soft pastel colors of yellow, pink and blue with flowers all around. But is that really an accurate portrayal of Mother's Day or is that what we have been programmed to think?

I don't know how many of you watch the show "Modern Family" on ABC, but this week they portrayed what I consider to be a more realistic view of Mother's Day. Brief recap for those who didn't see it. One of the main characters, Claire, is a mother with 3 children-two teens and a preteen. She wanted to go on a hike for Mother's Day with her step-mother (who is about the same age as her) and all the kids. During the hike, the kids started wining, complaining, and fighting from the get-go. So Claire and her step-mother, Gloria, decided to continue and finish the hike. When they reach the top, Claire begins to talk about how she doesn't want Gloria to judge her, but sometimes she feels like punching her kids. Gloria is shocked and says she could never say anything bad about her son (who is 12). Then Claire says something that I think all mother's (who are honest) have thought at one time or another, "Anybody who has ever had a child, knows they can irritate the freakin' life out of you at some point, am I right? Then Gloria gets honest and mentions somethings that bother her about her son, Manny. Unfortunately, turns out Manny was listening and then Gloria feels bad and takes it all back, blaming Claire who she says "made her say it". Claire finishes with a great point and tells Manny that "sometimes parents criticize kids to make them stronger" and also tells him that sometimes parents just need to "blow off steam."

Do I love my children? With all my heart! Do some of their actions make me want to pull my hair out and move away? Almost daily. But that's what true parenting is. Moments of the good, the bad, and the ugly...the very, very, ugly. If we aren't honest that sometimes our kids drive us crazy, all that emotion will be pent up inside. Besides our kids already know they drive us looney, so it's really no shock to them. Believe me, my kids read this blog a lot, so I know.

So am I saying that all of the flowers and pastel colors should be removed from the Mother's Day cards and banners? No, I would just be very happy, if once in a while, I saw a storm cloud and a warrior's sword on a few...

Wednesday, May 4, 2011

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...