Wednesday, January 26, 2011

Welcome to Holland

I would like to post a short essay that was shared with me several months ago, shortly after we found out Sophie is deaf.  I know I've tried to explain some of my crazy emotions in the past, but I think this essay really does a great job in painting a picture of this emotional journey:


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

In the beginning, I could not stop greiving over our lost trip to Italy. I was jealous of all the people that got to go there and have a fantastic, carefree time. I just didn't understand why were stuck in Holland and were never going to make it to Italy. Now, I realize that I am meant to live here in Holland. This is my home now and I am perfectly happy where I am.

I guess I haven't shared this essay sooner because I think I may have just recently realized that Holland is a great place. Don't get me wrong - there are plenty of bad days, but I'm sure there are bad days in Italy as well. And the good days? Well, the good days are just simply amazing here. :)

Monday, January 17, 2011

CI Headbands

Got to love 3 day weekends - we sure need more of them! We had quite a busy weekend filled with errands, a wedding, and visits with family, but I had plenty of quality time to spend with Sophie. :) It was nice having a long weekend because I feel like I haven’t had much time to spend with her since activation because of work. 

Sophie still seems to be doing great with her CIs. She is keeping them on and is tolerating sound well. Our audiologist gave us access to four programs to progressively work through last week and Sophie is now on program #3. I’m sure she will be on #4 by the time we go back on Wednesday.

Sophie appears to be even more social since activation (if that’s possible).  She is incredibly smiley and seems to laugh more often.  She is still mesmerized by her noisy toys and I’ve noticed that she really takes an interest when we talk to her. I’m sure speech still sounds very funny to her, but I know her brain is constantly processing all of this new information. I’ve been trying to talk to Sophie at all times and label EVERYTHING I see or do to her.
I also let her watch a DVD today: Baby Einstein – Baby’s First Sounds. We received this as a gift while we were pregnant with Sophie and I could never bring myself to open it (or even look at it) before last week. Well, she loved it! Not only was she in a trance while watching, but she also babbled and yelled at the TV! She has never done that before. So cool!
Here she is, frozen and LISTENING!

Also, thanks to inspiration from Lily’s Mom, I have found a better way to wear her CIs:

By sewing elastic on the headband, we are able to connect the full battery to the processor. This way, we do not have to clip the battery pack to Sophie’s clothing AND the elastic keeps the weight of the processor from bending her poor little ears. Genius! No more cords! I have only made one of these headbands so far, but I’m quite proud of it. You see, I’m pretty much the opposite of crafty. In fact, it’s safe to say that my husband is the seamstress of the family. It may have taken some time and troubleshooting, but it is functional! I will probably make a few more and get some cute flower clippies to jazz them up. J
Lastly, I will say this – Sophie sure does attract a lot of attention with her new head gear. We went grocery shopping and to Target over the weekend and everyone was staring at her.  And I mean stop dead in their tracks, mouth dropping, head turning as we pass by - STARING. I guess it is because most people have no idea what a CI is. When Sophie had her hearing aids, it was a little different. We received plenty of questions and looks, but everyone pretty much knew that the weird things in her ears were hearing aids. This is a completely new concept to most people and the device looks funny. The stares didn’t bother me, though. At all. I felt proud of her. I AM proud of her. She’s a very special girl.

Thursday, January 13, 2011

Three days later and two AMAZING videos to share!

Here we are, three days after activation and Sophie is doing wonderfully. We are definitely noticing a big difference in our little girl! We were told that it may take weeks or even months to notice a change, but Sophie is already responding to sounds. She even turns her head to her name! I still find myself second guessing and over-analyzing her responses, but I guess I am just used to questioning everything from our hearing aid days. There is no doubt, though - our angel is HEARING! Oh my goodness, this was worth the wait!

The biggest difference we have noticed in Sophie so far is when she is playing with her toys. She is fascinated with every toy that makes noise and she "dances" often. She loved to dance before her CIs, but she only did it when she was mimicking Mommy or Daddy. Now she can hear the music and I see her dancing on her own all the time. She is also responding to us when we call her name. I don't think she actually knows her name yet, but she can hear it and wants to know what is going on! Yesterday, we were nursing in her room and Jared stood in the doorway where she could not see him. He started to say Sophie's name and she stopped and sat straight up, trying to find him. So awesome!

Here are a couple short videos of this miracle unfolding before our eyes:

Sophie turning to her name. (Please ignore my old ratty robe. I was NOT camera ready). ;)

Dancing Queen!

Anyway, the past few days have been a whirlwind, but we are adjusting well. We had our first mapping session since activation yesterday and it went great. Sophie worked for 2.5 hours straight - such a trooper! We were able to get very good information from her to program her CIs. She has really become a pro at turning her head to tell us she heard a sound. Such a smart girl! Now that she has her CIs, she is getting a new therapist, who we met yesterday. She is very nice and told us she is very confident about teaching Sophie and thinks she will do amazing.

So far, this has been the best way to wear her processors. We have also used wig tape and that works really great, but it loses stickiness and I find myself having to reapply it. We just need more headbands like this. Right now, we have hot pink, white, and purple. :)

We are also getting used to her equipment, but it was very overwhelming at first. Talk about information overload:

I feel so much relief already and I know there will be more to come. This is just the beginning and it is already amazing. I'm feeling very optimistic and I can't wait to see what is next!

My happy HEARING girl!

Monday, January 10, 2011


Today was a very special day for Sophie – it was her hearing birthday. Most likely, today was the first time in her life that she has actually heard clear sound.  This is what we have been waiting for since we found out our baby girl is deaf – ACTIVATION DAY! Overall, Sophie did wonderfully! Here is the recap:

Activation began with the audiologist introducing a series of tones and beeps through the computer to Sophie’s implants while she sat in a high chair playing. When Sophie heard a sound, she would look up, blink, or widen her eyes. Eventually, she began to turn towards a dark box that her audiologist would light up when she showed a response.  After the beeps, Sophie’s processors were changed over to speech.  It was apparent that Sophie was very curious by hearing voices. She would turn and look at me with a question in her eye, “What is that, Mom?” A few times, Sophie grew scared and cried. As the session went on, Sophie became more and more used to the sound.

Here are a couple short videos of the day. In the beginning of this first one, Sophie is responding to sounds played through the computer that we cannot hear.

After our audiology session, we quickly ran by her school to get some supplies.  Everyone was so excited to see Sophie and her new head gear. It was a little emotional for me because it felt like just yesterday that I was toting my little four week old baby around on our tour, just two days after learning she is deaf. I remember the incredible comfort and hope that was brought to me by that visit.  I was informed about this amazing technology and told that she may even be able to get her CIs before her first birthday. Wow – have we really made it this far already?!

Once we got home, Sophie’s poor little brain was overloaded and she took quite a nap. When she woke and I put her processors back on, she became upset and cried again, even though I had turned them to the lowest setting. This is how new sound is to her! Can you imagine? Once she adjusted, I noticed quite a difference in Sophie playing.  She appeared to be much more curious about her toys. She would furrow her brow and look up at me, as if to say, “Huh? I didn’t know this thing made noise?! I just like looking at the lights!” I also noticed that she would blink every time I clapped my hands and she was more engaged when I was talking. 
Overall, a very great day! I'm a little nervous about leaving Sophie at the babysitter tomorrow. I just know how overwhelming it is and I want to make sure Sophie is given every chance to excel. ;) However, I did make our sitter a quick reference guide for her CIs! Maybe that makes me a little neurotic, but it will give me peace of mind.
Right now, Sophie’s CIs are programmed very low because we do not want to overwhelm her with sound. We go back to her school on Wednesday and then again next week and they will gradually add more programs until the CIs are working at an optimal level. We will also be having auditory verbal (AV) therapy several times a month to get Sophie talking. So excited to start this journey!
In other news, I have been so wrapped up in this surgery and activation that I have completely forgotten to give any general updates on my little girl. Sophie has really changed over this past month or so and is becoming more and more of a little person, with her own distinguished personality.  She crawls everywhere, pulls up on everything until she is standing, and has completely mastered the notorious step in our kitchen. Sophie also claps,  dances,  and waves “hi” and “bye”.  She will really wave any time someone waves at her, but it is cute regardless. The ladies at her school were loving it today. She also plays catch! Don’t get me wrong, she doesn’t actually catch the ball, but she takes turns with us, throwing it back and forth. Oh, and let’s not forget the kisses! She gives the sweetest open-mouthed kisses. So far, only Mommy, Daddy, Uncle Brian, Grandma, and Grandpa have been the lucky recipients. ;)

Saturday, January 8, 2011

Update: Activation delay and Connexin news

Well, the past couple of days have not exactly gone as planned. As my husband puts it, we had a hostile takeover by the flu in the Pratt household! Sophie's activation was cancelled yesterday and is now scheduled for Monday. What's three more days, right? Ugh! Anyway, I was the last to get sick and I'm starting to feel much better. So, Monday it is!

In other BIG news, Sophie's ENT called a few nights ago with the results of the blood tests that were taken during Sophie's surgery. Her deafness was caused by a mutation in a gene called Connexin. Every person carries two copies of this gene and Jared and I must each carry a flawed copy, which was passed along to Sophie. I haven't found any solid research recently, but I remember in the early days of Sophie's diagnosis, we were told that approximately 1 in 33 people carry a flawed Connexin gene. So, what does this mean? If Jared and I have another child, there is a 25% chance that the baby will have hearing loss. Here are the scenarios:

* Jared and I both pass a regular copy of gene to baby = hearing
* I pass flawed copy and Jared passes regular copy = hearing
* I pass regular copy and Jared passes flawed copy = hearing
* Jared and I both pass flawed copies to baby = hearing loss

My first thought was, "Gosh, what are the chances?!" Even though 1 in 33 people may carry a flawed copy (which is relatively common), what are the chances of two carriers having a child together? I guess when you come from a small town and marry someone you were friends with as a young teenager, those odds grow a little higher...? ;)

Anyway, I have been contemplating this news and I feel very indifferent about it. First of all, we finally have an answer! I can stop feeling guilty and questioning everything that went on during my pregnancy. Also, hearing loss caused by Connexin is non-syndromic. This means we have no reason to worry that Sophie will have any other problems that are associated with hearing loss (vision problems, learning disabilities, etc...). Additionally, research has indicated that children who have deafness caused by Connexin do wonderfully with cochlear implants. Of course, we are saddened with the news that we may be facing the same challenges with another child. I had to hold back tears while I was on the phone with Dr. C because I knew what the Connexin news meant for our future. We have much to think about and plan on seeing a genetic counselor to get more information.

This was bittersweet news, but we are very relieved to have an answer.

Wednesday, January 5, 2011

Well, the BIG day is almost here!

Activation is in less than 48 hours! Wow - we have been waiting almost 9 months for this day to come.  I am both excited and nervous. Honestly, I have been experiencing increasing anxiety over her activation in the last few days and I'm not really sure why. I know what to expect. I'm not counting on an "A-HA!" moment and I know that it could take several weeks or months to notice Sophie reacting to sounds.  I guess I am just nervous because everything we have planned so far leads up to this step and now we are facing it. I also recall how overwhelmed I felt when Sophie first got her hearing aids. I just wanted to cry and the thought of dealing with her aids on a daily basis was unfathomable to me. Eventually, however, it became second nature.

I know her CIs will be different. It will be hard work and require much dedication, but I know we are going to eventually see a benefit. I can't wait for the moment when I see a difference in Sophie. This will be my "A-HA!" moment. The moment that I will feel free from the worry that I have been carrying around. We are going to get there!

Anyway, it's finally here! Friday is the big day! I will try to post an update this weekend. :)