Here we are, six weeks later...

Sophie was activated exactly six weeks ago today! It's hard to believe that it was such a short time ago, because I feel like she has shown an incredible amount of progress. We have gone from being elated when witnessing Sophie turn to our voices to now expecting her to turn to softest sound or whisper. It's a good feeling!

Sophie hasn't spoken her first word yet, but we have been told not to expect that for several months. Right now, is "listening time". Her receptive language, on the other hand, has really exploded. Below is a list of words that Sophie knows:

doggy
ball
Mommy
Daddy
kitty
sock
baby
rattle
kiss
up
hi/bye

I'm sure she understands more, but these are the words that have been "tested" repetitively and I am 100% certain that she comprehends them. She also claps her hands together when we say, "Yay!", which is also very cool. We were told to expect Sophie to understand approximately 25 words by 6-9 months after activation. I think she has a pretty great start and we are extremely proud of her. Of course, I am anxious for her to start talking, but I have to remember that she is only 10 months old! Slow down, Mom - most hearing babies are still just babbling. ;)

Below is a short video of Sophie and her daddy reading How Do Dinosaurs Love Their Cats?:

It's a little hard to see, but there are a mix of dinosaurs and cats on the pages and Sophie was picking out the "kitty" on each page. She was right on!

We are truly watching a miracle unfold before us and we are forever indebted to the inventor of the cochlear implant. Professor Graeme Clark, thank you - you have my eternal gratitude!

Just one of those days...

Have you ever had a day where nothing really went terribly wrong, but little things just piled up and you just felt defeated by the end? That was my day yesterday. Just a bad day, I guess.

My husband emailed me yesterday morning to tell me that one of Sophie's CIs wasn't working. Her babysitter had called mid-morning to tell him about the problem. After troubleshooting, her CI still wasn't working, so I figured she was just going to have to make it through the day with one ear. (Jared was going to try to leave his office in the afternoon to fix the problem, but never got a chance to.)

In the midst of all of this, I spent my lunch break hurriedly making half a dozen phone calls to find a genetic counselor that is covered by our insurance. (Have I mentioned that the people at Anthem know me by name?)  I *think* I may have found one, but neither Anthem or the doctor's office could guarantee that our visit will be covered.  "It all depends on how the claim is submitted." Nice. Plus, this geneticist lives out of state and only comes to St. Louis once a month. Therefore, we are looking at an appointment in late spring/early summer. Oh well, at least that ball is rolling.

Now comes the worst part of my day. I picked Sophie up at the babysitter's house and she was not wearing her other CI. Both were off and had basically been off all day long! WHAT?! I was pretty much livid and could hardly hold back tears as I put Sophie in the car. Our babysitter said that she was having problems with the other CI and that she took it off shortly after she spoke with Jared. If I would have known this, I would have left work immediately. I was just so upset that Sophie went without sound for almost eight hours straight. I guess it's my own fault for not calling and checking in with her, but I just figured there would be no problems with the other CI.

I should mention that we absolutely love Sophie's babysitter and she has been doing a great job with everything so far. She was a trooper with her hearing aids and has been doing a great job with the CIs. She loves Sophie and also wants what is best for her. I just don't understand what happened yesterday because one of Sophie's CIs was working fine when we got home. Of course, I started to freak out a bit and think that maybe Sophie is never wearing her CIs during the day. How would we know? I started to feel like I was failing her by working full-time and having someone else take care of her all day long. One thing just kept leading to another and I had all these frustrating thoughts going through my head.

No matter how well Sophie is doing, sometimes the reality of her hearing loss comes to a head and feels like a slap in the face. And I know these days will happen, it is inevitable.

I feel better today. I had a nice talk with Sophie's babysitter (she initiated, I didn't even have to) and I feel reassured. She understands that Sophie's CIs are a part of her and are the very key to her success. She also convinced me that they are on all of the time except when napping. I think yesterday was just a fluke and will hopefully not happen again.

On a positive note, the weather was absolutely beautiful today in St. Louis. 70 degrees and sunny! Quite the change considering we still had several inches of snow and ice on the ground a few days ago. Sophie and I went for a nice long walk when we got home today. It was the first time we have been outside for more than a trip to the car since she has been "hearing". She kept pointing to all of the dogs that were barking (at Ollie) as we passed by. :)

Ball!

We have been working really hard this past week on new words and phrases and I have another awesome moment to share! Check it out:

I'm so proud of Sophie! She continues to amaze me every day. My first word as a baby was "ball", so it would be pretty neat if that were hers as well. However, I'm sure I will be equally elated with "Mommy"! ;)

My first "A-HA!" moment!

And boy did I deserve it after the last week and a half that we have had! It has been a little rough in our house lately. Illness. Yes, again. :( Sophie came down with RSV and an ear infection early last week and has slowly been getting better. Jared and I must have caught the nasty little virus from her and are still at war with it. Seriously, I have never been sick so often before in my life! I'm just hoping that everyone gets back to 100% soon and stays there for awhile!

Anyway, back to the purpose of this post. It has been three weeks now since activation and Sophie is doing wonderfully. She is responding to sounds and speech and is much more aware of her environment. As I have stated before, I narrate and label everything to her. In the past week or so, we have really focused on the word "doggy". We have a pet Maltese named Ollie and Sophie absolutely loves him. Great language opportunity, right?! In the past few days, when I say "dogg-eee", I have noticed Sophie look around for Ollie and start to crawl towards him if he is near. Of course, me being the skeptical realist that I am, this was not enough to prove that she actually understood what "doggy" meant. I have to continue to experiment until I am absolutely certain! ;)

Today, two amazing things happened to make me a believer. This morning, Sophie was in her high chair and we were eating breakfast. In between bites and me saying "open" and "mmm...oatmeal", I snuck in a "dogg-eee...?". Sophie instantly froze and looked all around. Then she leaned over each side of her high chair to look for Ollie (where he usually hangs out waiting for food to drop). I swear, it was as though I could hear the music and see the rays of light shining down from above! She understands! This is actually working! Then, as if that wasn't enough, I continued to "test" her. Several hours later we were playing in the living room and I said, "dogg-eee?". She stopped playing and actually POINTED to Ollie, who was lounging by the couch. Pointed to the doggy! How's that for receptive language, boys and girls?!

I tested my luck and tried to capture it on video. This is what I got:

Pretty amazing if you ask me!

Today was definitely my first "A-HA!" moment and I'm confident that it will be the first of many. I am seeing results and indications that this hard work is paying off. My deaf baby is showing me that she understands spoken language! And while I may still feel pretty sick and crummy right now, I feel more emotionally free than I have in a very long time.

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:

WELCOME TO HOLLAND

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. :)

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.

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!