Saturday, December 31, 2011

Goodbye, 2011!

In the blink of an eye, this year has come and gone. I feel like time has sprinted by, but when I reflect on everything that has happened, it is hard to fathom how we crammed it all in. At this time last year, Sophie was recovering from her CI surgery and we were anticipating activation day. It had been quite an emotional year for us - departing from our “normal”, learning how to embrace our challenges, and preparing for the road ahead.  I was incredibly hopeful for what 2011 would mean for Sophie and our family and I can happily say that I was not let down. What an amazing year.

If I had to sum up 2011 with a single word, it would have to be EXCITING.  The year started with a bang when Sophie’s CIs were activated and she heard sound for the first time. That day started a new chapter of our lives, one that we had envisioned for a long time and have been living out ever since. I feel so privileged to be the mother of such a special child and get to experience the milestones and memories that accompany this journey -  
The exhilarating rush that came over me when I watched Sophie turn to her name for the first time. Tears stinging my eyes while watching her dance and twirl to music.  Holding my breath as she uttered her first words, and the shrieks of excitement and hugs that followed. These are just a few of my favorite moments from this past year.
I’m feeling very confident about the joys that 2012 will bring and I’m happier than ever with where we are at. I finally feel like WE CAN DO THIS, even though we have been doing it for a while. We have definitely caught our breath and are finding our new “normal”.  And as time goes by, I am increasingly confident that the uncertainty about the future will fade away, as it is already starting to do. I can only hope that 2012 will hold as many exciting moments and memories as we have been lucky to experience this year. Goodbye, 2011 – I can’t wait to see what 2012 has in store for us!
Happy New Year, everyone!

Wednesday, December 21, 2011

"Sophie have it!"

I shot this video last night and had to take a minute to share. Although there is some nose-picking in the beginning and Sophie is far from grammatically correct, it is pretty cute!


Think we need to work on sharing??? :)

Monday, December 19, 2011

A day to recharge

Days like this are few and far between, but sooooo worth it! Most of today was spent in our jammies, lounging around, and enjoying this exciting time of year. We did not focus on speech therapy, cleaning, laundry, work, or any other part of regular daily life. Today, our focus was on COOKIES! ;)

 










I wish our schedule allowed for more of these lazy days and I can only hope that these are the times Sophie remembers most as she grows older - I know I will. 

Wednesday, December 14, 2011

Worth it

Is it... hard? Yes.
Frustrating? Almost daily.
Scary? You betcha.
Uncertain? Absolutely.

Rewarding? In an incredible way that cannot be described with words.

Last night, Sophie and I were making a sandwich when she spontaneously said, "Eh musserd is ellow, Mommy!" Even though I knew I was alone, I looked around the room to see if anyone else witnessed her speak that gloriously full sentence with close to perfect pronunciation. Sure enough, it was only me. I just smiled and said, "Yes! Yes! The mustard is yellow!" Then my heart just about exploded.

And now, as I sit here trying to quickly type out my thoughts, my demanding toddler is screaming, "Read eh Elmo book, Mommy!" My cup runneth over.

The challenges that come with raising a deaf child magnify the sweetness of these proud moments.

So, given the opportunity, would I change a single thing?
Not.a.chance.

Sunday, December 4, 2011

Oh, the excitement!

I'm not the only one that is crazy about the holidays in our household! I knew this year would be fun because Sophie is getting old enough to enjoy many of the exciting things having to do with Christmas, but she has been Santa-crazed lately. The man in the red suit has definitely taken the place of Elmo and Dora for the time-being.


Her excitement about "Santa's hat" is nothing compared to the real deal of the big guy.  And she pretty much always shrieks like that when referring to him. Car rides home at night now consist of Sophie SCREAMING about all the lights and inflatable Santas and snowmen. Not only do I secretly love listening to the screaming, but it also gives me a break from singing the Wheels on the Bus over and over again. Win-win. ;) 

Such an exciting time of year!



Tuesday, November 22, 2011

Sophie is thankful for....


You guessed it - her EARS!!!

I hope this video warms your heart, as it does mine. :) Happy Thanksgiving!

Sunday, November 20, 2011

Her voice

My absolute favorite part of the year is officially here – the HOLIDAYS!!! The weather is changing, stores are already decked out, and neighbors are beginning to put up lights and decorations. I love this time of year. :) Most of us begin the holiday season reflecting on the last year and thinking about what we are thankful for. I cannot believe how fast time has gone by and that 2011 is already coming to a close. At this time last year, we were anxiously awaiting Sophie’s CI surgery. It was going to be being Sophie’s first Thanksgiving and Christmas, but the surgery was really the most important thing that was happening. I had many hopes and expectations for what CIs would mean for Sophie and our family and I can honestly say that my hopes are now reality and my expectations have been exceeded. The days and weeks sometime feel like a whirlwind and are increasingly difficult to balance, but the time and dedication is worth it because Sophie is HEARING and TALKING.  A lot.  ;)

I am thankful for many, many things this season, but most of all, I am thankful for Sophie’s VOICE. While quite a simple pleasure, hearing her voice is the sweetest sound I can possibly experience. It brings me incredible joy and hope, yet also reminds me of the continual journey we are on to hear her speak her sweet words. To me, Sophie’s voice is like that of an angel - uplifting and inspiring, but also grounding and humbling. It constantly reminds me of what is truly important and to never take anything for granted. Although some may regard it as routine and repetitive, a simple “Mommy” uttered from the lips of a deaf child is purely remarkable. I am lucky enough to experience the extraordinary miracle of this sweet voice every.single.day. And because of that, I am eternally thankful.


What are you thankful for??

Sunday, November 6, 2011

A big girl? Already?!

Sophie thinks she is, anyway. I'm not really sure where she picked it up, but her favorite phrase over the weekend was, "I BIG GIRL!".


Quite cute, but I'm not ready for this yet! ;)

Sunday, October 30, 2011

Trick or treat?!

This little kitty is READY for Halloween tomorrow!


We have a day/night full of festivities planned and I'm excited to have the day off to spend with Sophie. I hope everyone has a safe and happy Halloween!

Wednesday, October 19, 2011

Experiencing new territory

I'd have to say one of the most exciting parts of this journey is that everything is constantly changing. Like any other parent, of course I love to witness Sophie learn new things and watch the wheels turning in her head. However, I feel like the milestones that we encounter are much more celebrated because it is so much harder for Sophie. She is a such a special girl and I will never take anything she accomplishes for granted.


We began this journey by reveling in the fact that she continued to coo and babble during her hearing aid days, even though she was hearing little to no sound at all.  After her CI activation, our days were filled with "A-HA" moments as she began to learn what words meant at lightning speed. Then we began to anticipate her first words and were overjoyed when she finally spoke them and never looked back. We are entering a new stage now as she continues to string together words at an amazing pace. Counting her new words is almost a thing of the past, as I'm struggling to keep up with her sentences!

When we were away last week, Sophie stayed with my mom and I was blown away by all of the new phrases and sentences she came home with. She just tears through the house, spontaneously putting together new sentences. Jared and I are constantly glancing at each other and wondering, "Did she just say that? Really?!" Some of my new favorites are "Be right back!" and "I'm stuck!". Most days it is hard to believe that this little tot is only 18 months old, not to mention has a profound hearing loss. ;) In the video below, Sophie tells me that she is opening/shutting the door (a new obsession) and that it is dark outside.


Such a funny little girl, isn't she?

P.S. GO CARDS!!!!!!!!

Sunday, October 16, 2011

Back to reality...

What a week! The hubby and I just returned from a trip to Mexico where we relaxed on the beach, enjoyed amazing food, and met new friends. It was hard being away from Sophie, but so nice to spend uninterrupted time together. I also LOVED not setting an alarm clock for an entire week! I can't even remember a time when I felt this well-rested. ;)

Yum!
Yikes!

Soaking up some sun :)

Simply beautiful


We planned this trip for our fifth wedding anniversary, which was earlier this month. It's hard to believe it's already been that long, as time rolls along so quickly now. And I'm still happy to say that I married my best friend. We've been through some relatively tough times for a young couple and I am incredibly grateful to have Jared by my side. Our life is crazy, but I'm certain that there is no one I'd rather spend it with.


"Even if things get HEAVY we'll all FLOAT ON"


Tuesday, October 4, 2011

Read a book!

Just a silly video to share! The latest phrase heard throughout the house is "read a book". All. the. time...


In case you can't tell, we're still working on "cockadoodle-doo" ;)

I apologize for just videos lately. I have many things racing through my head that I hope to blog about sometime soon, but I can't seem to find time to formulate my thoughts into words that make sense. I guess that's life with a toddler, right?! Life is busy and work is crazy, but there is a VACATION in my future!!! The hubby and I have a tropical getaway planned and we leave this weekend. Just a few more days and I will be sitting on a sunny beach with a drink in my hand. :)

Can't wait. Will sure miss this little princess, though:

Monday, September 19, 2011

Have we already made it this far?

I came across one of Sophie's old vocab books the other night and thought it would be interesting to go through it with her to see what words she could say. We haven't touched this book in several months, so I was pretty proud of her:


It was quite the rewarding moment to see Sophie express these words with ease, as it seems like it was very recently that we were working so hard to understand them. I remember the feelings of anxiety and apprehension waiting for her to speak her first words. And then her language just took off - almost overnight. Now she is learning to speak several new words a day and this slacker mom can hardly keep her list up anymore (we have definitely reached triple digits, though). 

Patience is bitter, but its fruit is sweet. 

This is something I must tell myself routinely and patience is definitely an essential part of this journey. So, for all the moms out there who are waiting for something, who are patiently anticipating first words or any other "A-HA" moment - it will happen. Keep up the hard work in the meantime. :)

Friday, September 16, 2011

Night-night!

This little girl was quite exhausted after her first full week of school:


Sophie has always been a great sleeper, but I've never seen her beg so hard to go to bed (this was at 7:15). Such a sweetie. ;) Now, time for a glass of wine!

I hope everyone has a great weekend!!!

Tuesday, September 13, 2011

It's official...

My baby is growing up. As of today, I am no longer Momma, I am now Mommy. Before I know it, I'm going to be just plain Mom. How does this time go by so fast???

Here is Sophie, calling me by my new title:


The funniest part of this video is the way she unwillingly repeats, "love you" in a weird voice at the end. I bet if she could roll her eyes, she would have. At least Mommy sounds pretty sweet, right?

I also shot another funny video of Sophie at dinner. Since her vocabulary is growing, we have started working on simple sentences with her. She will attempt (and pronounce pretty well, age considering) simple phrases such as "Shut the door", "Up, please," or "I want _____", but she had quite a problem tonight trying to say "I want cheese":


She was trying so hard! My silly girl definitely gets an "A" for effort. :)

P.S. - Sophie is absolutely LOVING school and I will try to post more details when I get more time.

Wednesday, September 7, 2011

First day of school :)

Here is a recap of Sophie's first day at Moog (in pictures):

Rise and shine - ready to go!

A little nervous?

Getting pumped!

Sophie and her therapist, Laurie. She's awesome! ;)

Thank goodness for babies!

She doesn't know we're about to leave...

Snapshot of the day

Language activity

Overall, a very great first day! There were minimal tears involved, although Sophie did try to bolt out of the school entrance and back into the parking lot when we first arrived. Once we got into her classroom and she saw Laurie, she was fine. She waved and said "Byeeee!" to both of us and that was it. Sophie went on to have a fantastic day at school and was only marginally excited to see me at pick-up time. ;)

Today gave me a glimpse of what this school year is going to be like and I can't wait!!! We are all incredibly excited and hopeful of what is to come.

Wednesday, August 31, 2011

Goals

First of all, I just want to mention that many people have told me recently how this blog tugs at their heart and makes them cry. When I started this blog, I promised to be honest and real at all times. There is no fluff.  I blog about the happy and exciting experiences in this journey, but also about the things that weigh heavily on my heart. This blog serves as many things for me – but mostly an outlet. A place where I can share moments and feelings - whether they are happy or sad. It is not my intent to make anyone cry or feel down, but that is where this journey takes me at times. There are good days then bad, exhilarating then stressful.  Most of the time, I am happy though – I promise! ;)

Anyway, earlier this week, I went out to dinner with a group of people after a meeting for work. I was explaining to everyone how Sophie was doing and that she would be starting a program at an oral deaf school when a colleague asked, “What are your goals for Sophie?” I was dumbfounded. You see, I hardly ever get asked these types of questions. People usually ask how Sophie is doing, smile and nod, and become uncomfortable when my answers turn serious. Even close friends and family hardly ever ask me hard questions like that; they just want to hear the good things – all of the fluff. Not only did I immensely appreciate being asked that question; it really made me think. How do I convey my hopes and dreams for this special child? I muttered something about being mainstreamed at an early age (the best answer I could give in a crowded, noisy restaurant over food and drinks), but I thought about the question my entire drive home.
The truth is, I have many goals for Sophie and for our family. I cannot define it in a single answer, so I began to make a list. I’m sure these goals will change as Sophie grows and flourishes, but these are my hopes today. Some are light and quirky, others are deep and heavy. Some are defined and others immeasurable. All are important:

·         I hope that Sophie quickly learns to put her coil back on her head when it falls off. This will save me much frustration and near-car accidents as I reach back to fix it. (It’s a good thing my arms are freakishly long.)

·         I hope Sophie enjoys going to school and begins to develop a great foundation of language, communication, and listening skills.

·         I hope that she continues to excel in her language development and we are able to overcome hurdles and frustrations with positive outlook and minimal tears.

·         I hope I am able to maintain the positive outlook that I occasionally struggle to keep as the years roll by and Sophie gets older.

·         I hope that she continues to be a morning person like her Daddy and she too will soon be singing songs to me early in the morning, purposefully trying to annoy me.

·         When Sophie realizes she is deaf, I hope she never feels ashamed or embarrassed. I want her to embrace it and understand how special she is. She has given our family a gift that we would never have received otherwise. A gift that is difficult to describe with words.

·         I hope I am able to equip her with the self-esteem she needs to be able to face the world and achieve her dreams.

·         I hope I can teach her to be her own advocate at a young age and she is able to soar through mainstream school with dignity and grace.

·         I hope Sophie understands our decision for her to use cochlear implants, but is able to make her own decision about how she wants to communicate when she is old enough to understand the differences and what they mean for her in this world.

·         I hope I can find the right words to say when she someday says, “I wish I wasn’t deaf.” And I hope I am able to say those words without tears streaming down my face.

·         I hope Sophie is never defined by her hearing loss and is never held back because of it.

And finally, I hope I can hold up my end of the bargain and help Sophie and our family achieve all of these goals.

Tuesday, August 23, 2011

Please!

Just a cute video to share! I love the face Sophie makes as she says this word:

Sunday, August 21, 2011

Almost time...

...for the school year to start! We have about two weeks to go and Sophie could not be more excited! Okay, so she really has no clue, but I am very anxious. :) She is ready to go, complete with new shoes, a new fall wardrobe, and a backpack!


We went to our last audiology session until Sophie starts school a couple weeks ago, but I haven't had time to blog about it. We had another sound booth test and Sophie did great! She is responding to speech at 10-15 dB. My sister was with me this time because Jared had a meeting and there were two times that Sophie detected a sound that neither one of us heard. Absolutely amazing. Our audiologist also performed an Early Speech Perception test to determine how well Sophie understands speech. I was a little uncertain because they normally do not do the test on children as young as Sophie. Well, she nailed it! She showed "consistent word identification" meaning she is perceiving speech very well with her CIs.

As far as expressive language, Sophie's vocabulary is continuing to grow more each day. Our list - wrinkled, stained, and hanging on the fridge - is getting longer and longer. (I think it may be time to make an electronic version!) At last count, Sophie is saying 63 words and phrases. Take that, hearing loss! A couple of my new favorites are "Aunt Andi", pronounced "Ah-ah-tee" and "please". "Please" is the cutest, coupled by the sweet mispronunciation: "pweeeshhh", and the toothy grin that Sophie is forced to make at the end of the word:


Anyway, we are ready for school! It seems like it was just yesterday that I was pregnant with Sophie and we were busy planning for her arrival. Everything had to be absolutely perfect, from the nursery to childcare. We wanted in-home childcare for when Sophie was an infant and would explore different centers for a more structered setting by the time she was one and a half or two. We interviewed several people and found the perfect sitter in the beginning. Here we are today, at the point where we would begin looking at centers, and Sophie is entering a program at an oral deaf school. And it's a great one at that - a place families move from across the country to go to. Part of me is sad - sad that our child is deaf and has special needs that require her to go to a special school. Part of me wants to laugh - laugh at the plan that Jared and I had when we were naive and expecting our life to go the way we wanted. And then another part of me (and a pretty big one) feels incredibly lucky - lucky that Sophie gets to attend this AMAZING school with all of the AMAZING teachers and professionals that we would never have met if our life had gone according to plan.

Have I mentioned yet that we are excited?!

Monday, August 15, 2011

Tantrums...?!

My sweet angel,

Tonight marked another wonderful milestone in your development - your first full-on temper tantrum!


That's right - wailing, arching, hitting, kicking - the works. You became quite upset after dinner when I wouldn't let you take your cloth baby doll into the bath tub with you.


Yikes!


I'm now a little scared for what is still to come. Especially in about 15 years...!

At least you seemed to get over it pretty quickly:


I love you, Mom

Thursday, August 11, 2011

Hard questions, no real answers

Since discovering Sophie's hearing loss is genetic, I haven't spent too much time thinking about it. It has been in the back of my mind, a small worry just waiting to take over. Our ENT initially discussed Sophie's test results with us in January, but he was unsure because Sophie tested positive for an altered copy of two genes that cause hearing loss (Connexin 26 and 30). Anyway, we went to see a geneticist earlier this week to get a better understanding and make sure we have all of the facts straight.

Even though there is no history of deafness in our families, Jared and I each inherited an "altered" copy of a gene that causes hearing loss. 1 in 33 people carry this altered gene. (Our genetic counselor prefers to use the word altered over flawed or mutated, which I thought was hilarious, but obviously PC.) This means that our siblings each have a 50% chance of carrying the same altered gene and potentially passing it on. If or when we have future children, there is a 25% chance they will have hearing loss. If any of you previously read this post, it gives the possible scenarios. Since Sophie received two altered copies from us, if she has a child with a person who is also a carrier, there will be a 50% chance her child will have hearing loss. If she has a child with a person who also has hearing loss caused by Connexin, her child will have hearing loss as well.

We had done our research ahead of time and there were really no surprises from our visit. I'm glad we went and were able to talk to an expert, though. I feel much better having our ideas confirmed.

Since this visit, I can't seem to shake the aforementioned worry. I feel very indifferent and keep looking at things from a different perspective. We have always wanted more than one child, and still do. But now I can't seem to stop thinking about all of the "what ifs?". Although Sophie is doing great and I feel like we could do it again, she is too young to even know she is deaf. What is going to happen when she does? How hard is it going to be for her? Could I bring another child into this world knowing that they too may face this struggle? Is it selfish to want another child? Then there are times that I just cannot imagine Sophie NOT being a big sister. She is so sweet and caring already and I want her to have a sibling to share her life with.

I know that these questions cannot be answered because there are no real answers to be found.  Life just happens and you have to adjust and learn the best that you can. I surely never thought I would be faced with something this heavy so early in my life, but here I am. And I know that there are families out there that have harder struggles, heavier hearts, and the weight of the world on their shoulders. Even though I worry about what our future may hold, things could be so much worse and I am thankful each day for what we have been blessed with. I know that we will make the right decision for our family when that time comes - I'm just not quite sure what it is yet.

Monday, August 1, 2011

Tuesday, July 26, 2011

Excited! And a little overwhelmed...

We recently found out that FirstSteps cleared Sophie to attend school at Moog in the fall and I couldn't be more excited! She will be attending the toddler class for three mornings a week (M,W,F 8:30-12). The school year starts after Labor Day, so her first day will be 9/7. Just a little over a month away! Holy cow, time flies. I remember touring the school just days after we discovered Sophie's hearing loss. I stood frozen, watching the babies in the toddler room in utter amazement. That day gave me so much hope for Sophie and it is hard to fathom that we are already at this step.

Sophie starting school means a couple of things. For one (and I hate to admit it), I feel a little relief on the horizon. Right now, Sophie gets speech therapy about four times a month (three home visits and once at school when we go for audiology). The rest is up to us. I LIVE it everyday and it can be exhausting. It has become second nature, but I always feel like I should be doing more. Just this past weekend, we were driving home from grocery shopping and all of a sudden my husband blurts out,  "Babe, pay attention to the road. You DO NOT need to do therapy while you are driving!"  Hmm... Okay, point taken - although he always jumps at any opportunity to critique my driving skills. ;) Anyway, once she starts school, Sophie will be getting therapy three times a week, plus we will also still have two home visits a month. I'm hoping I will be able to relax a little. :)

Additionally (and this is where the overwhelming part comes in), Sophie starting school is going to be HARD to juggle. Jared and I both work full-time and have tough schedules. So how are we going to pull off having her in a half-day program?? It will require a lot of planning, flexibility, and help from others, but it is possible. My mom has offered to take care of Wednesdays and we have had several other family members and friends volunteer as well. I will say that Sophie is quite the lucky girl to have so many people in her life that love and support her. It may be tough, but we will make it work.  Anything for this sweet face:

Tuesday, July 19, 2011

My chatterbox

The days and weeks seem to have been getting the best of me lately! I try to update weekly, but there are just not enough hours in the day. Summertime for us means go, go, go! And heat! The temp has been reaching three digits in STL lately. Not cool. ;)

Anyway, I wanted to post a quick update while I have a few spare minutes. Sophie is ever-changing and is saying several new words including:

duck
Ollie (our dog)
apple
cow
alligator (sounds like "ah-gaa")
outside
ice
diaper
Dora (the Explorer)
hot
out
doggy
purple
no
star

Sophie is constantly babbling and talking in her own language, throwing in real words here and there. She is becoming very expressive of her wants and needs and is not afraid to tell us. When I put her down for bed or a nap, she stands in the corner of her crib yelling, "Up! Up!", even though she can't hear herself. As I type this, she is actually doing just that. I'm hearing, "Up! Aye-yayayayayaya! Up!"  Silly girl. When we pull into the driveway, she starts saying "Out!" because she hates the car and can't wait to get unstrapped. She is slowly evolving into such a little person and I cannot comprehend where the time has gone.

I also think she is turning into a Dora lover and I'm not sure how I feel about that. :) Our babysitter has a little girl who will be three in the fall and is obsessed with Dora. The other day when I picked Sophie up, she had a Dora doll in her hand and would not part with it. I recorded an episode when we got home today and this was her reaction:


I'm not a big fan of letting her watch TV, but this was pretty cute. I guess I'll keep an episode on the DVR, at least. ;) I also tried to get her on tape saying, "It's hot." and this is what I got:


Such a funny little girl! For every doubt and worry in my mind, there is always a cute moment or a heartwarming thought to counteract it. These times are just so FUN!

I hope everyone out there is having a great summer so far! Enjoy it, because it will be over before we know it. I will leave you with a video of what Sophie likes to do in her free time now. Hopefully it will bring a smile to your face as it does mine.

Thursday, July 7, 2011

It's the little things

No matter how hard of a day I'm having or how tough this journey gets, there are always little things throughout the day that make me smile and remember how lucky we are. Today it was this:


Tears filled my eyes as I watched Sophie twirl and bounce and I realized that I will never take these sweet moments for granted.  

"Be faithful in small things because it is in them that your strength lies."
-- Mother Teresa


Tuesday, June 28, 2011

My storm cloud

Hmm... where to begin? I guess I have been in somewhat of a dim (not quite dark) place lately. If you have read my previous post, you know that Sophie is doing amazing. She is ahead of hearing children her age and I feel like we have "made it", in a sense. Or at least made it to a point where we can take a breath because we sure as hell heck deserve it. I know this journey has just started, but I feel like we are not striving for something more at the moment. And although I'm thrilled with Sophie's progress and unbelievably proud of her, my heart is still heavy with worry and anxiety. I just can't shake it and I don't know if I ever will.

Picture beautiful blue skies, with the sun shining for miles and miles - as far as you can see. Out of the corner of your eye there is a tiny, dark cloud. You can barely see it, but it is lurking in your peripheral vision. No matter where you go or how bright the sun gets, the cloud is still there. It follows you everywhere, even taunting you at times. It will never, ever go away. You can only hope as time goes by the cloud will get smaller and smaller and further away until it is almost impossible to notice. This is my life. My storm cloud.

I am happy with where we are now, but I just have so many worries going through my head about Sophie and what lies ahead. What is going to happen when she starts school? Will she get picked on? How will she handle it? How is she going to handle the noisy cafeteria or school playground? When she asks other kids to speak up because she can't understand them, are they going to roll their eyes and brush her off? Will she be able to understand her teacher? Will she always have to sit in the front of the class? What if she wants to play a contact sport - how will we keep her implants on? In college - will she be able to hear her professor in the auditorium? When she becomes a mother, how is she going to know when her baby cries out at night? The list goes on and on...

I know that some of the questions that are racing through my mind may have rational answers, but it is overwhelming at times. Am I ever going to stop worrying about her? Will my mind ever be at ease? But my biggest worry - the most important thing - How do I teach her? How do I instill the dignity and grace that she will need to handle and overcome all of my worries?

I really don't know. I don't have the answers to any of those questions right now. And I guess I may never have completely clear blue skies. Does it really matter, though? As long as the sun is still shining, the birds are singing, and Sophie can hear them? Life is not about waiting for the storm to pass, it's about learning to dance in the rain. Right? That is what I keep telling myself and trying to live out since discovering that Sophie is deaf. I think the key word in that quote is learning. I'm still learning to dance in the rain. And I'll be honest with you - I am not a great dancer. But that doesn't mean I won't try.

Tuesday, June 21, 2011

Music to my ears

That is what I was hearing - my little girl, chattering away. As I started typing this blog, Sophie was playing with her dollhouse and singing a song to her baby. Although just gibberish, it was the sweetest song ever. Love it!

Anyway, I have much to update! Sophie has had quite the language explosion in the last month or so and I am excited to report that she is saying over 20 words! Can you believe it?! I feel like she learns a new word almost every single day. This is the current list of words/phrases that she says spontaneously:

ball                  hot dog
baby                all done
ma-ma             water
book                bear
uh-oh               bubble
eye                   more
bye-bye           owl
flower              girl
waffle              balloon
up                    da-da
open                choo-choo

So, I admittedly went a little crazy with the video camera last night. Just warning you! :)

Here I am trying to get her to say a couple of words:


It is getting harder and harder to capture anything on video nowadays! Below, we are going over her body parts. She will hardly sit still for this anymore:


Sophie's receptive language is also growing rapidly. I don't have a current list, but the last time I counted she had over 120 nouns that she can easily identify. The video below is pretty lengthy, but it is a good indicator some of the crazy words she knows. Also, notice how she follows directions when Jared asks her to turn the page:


Jared bought this book for Sophie a couple of months ago and I thought he was crazy. I was sure it would be way too complex for her to identify the animals since there are several to choose from on each page. He just had to prove me wrong, though! It is pretty amazing to see Sophie identify animals such as a flamingo and chameleon, so I'm not complaining. ;)

With Sophie's vocabulary growing so quickly, we are primarily focusing on noun/noun or noun/verb combinations now. For example, while playing, I will ask Sophie to put the baby on the toilet or make the duck fall down. This way, she has to identify the noun(s) I am talking about and take the appropriate action. Just a few minutes ago, while in the office trying to type this blog, Sophie was growing restless playing with her dollhouse. I asked her to get a book from her room and bring it to Mommy. I had to repeat it twice, but she walked into her room, emerged with a book, and brought it into the room I was in. Incredible.

It's hard to believe that a baby who is not even 15 months old is able to follow directions like that, much less a baby that is profoundly deaf. It's things like this that I have to remember when I have a bad day and get down about her hearing loss. I have to remember that it could be so much worse and we are extremely lucky. Oh yeah, and this sweet little face works pretty well too:



Sunday, June 19, 2011

Sophie, Lily, and Alexander

We had a special treat earlier this weekend when we got to meet this awesome mom and her two sweet kiddos, Lily and Alexander! They were in St. Louis for Moog's summer workshop and stopped by on Friday evening for a visit. Lily is two years old and has bilateral implants. Alexander is a little guy (just nine months old) and wears hearing aids. Their hearing loss is also caused by Connexin. It was so nice to meet another family that has gone through the same ups and downs that we are experiencing. Another mom that completely and totally "gets it".

Lily is doing wonderfully and she absolutely blew me away with her language. The sentences she was putting together forced me to just smile and shake my head. Amazing. I hope Sophie is doing that well in another year or so. :)

I took a few pics of the girls together, but it was after bedtime, so you can only imagine the outcome. ;)



I promise to post a detailed update of Sophie's progress soon. She is in the middle of a language explosion and is saying a ton of new words, but I haven't had any time to blog lately. It's so exciting, though!

Lastly, Happy Father's Day to all the wonderful dads out there!

Sunday, June 5, 2011

Summer anxiety

Yes, summer is officially here - St. Louis was hit by almost 100 degree weather this weekend. Wow, it sure was a hot one! If there is one thing that represents summer, I would have to say it is water. What is the first thing that comes to your mind when you think of summer? Swimming? The beach? A vacation to the lake? Water.

As a kid, I spent my summers running through sprinklers and swimming. My parents had a boat and I absolutely loved the water. I want Sophie to have the same experiences that I did as a child, but my anxiety about her CIs is already in high gear.  I have read about various "waterproofing" techniques, but I am not sure if I want to risk it. She can go without her CIs in the water, but then she cannot hear anything. She won't be able to hear me calling her name, the whistle of the lifeguard, or the attendant at the water slide telling her to "Go!".

We went to the pool today and Sophie wore her CIs. At this age, it is pretty easy because we can just sit around in the kiddie pool. I was very careful and would hardly let Sophie even walk in the water without holding her hand. I was always right by her side, ready to catch her if her head was getting anywhere close to the water. Next year is going to be a different story. She will want to run, splash, and just be careless like a little kid ought to be. I know that this is going to be one of the many things that will set her apart and I just want her to be able to have summer fun like all of the other kids.  I'm not sure how we will approach it yet, I guess we will just cross that bridge when we get there. 

For now, I will leave you with a few pics of my summer girl having fun in the sun:




Tuesday, May 31, 2011

An interesting encounter


Has it really been two weeks since I last posted? It sure is crazy how my days and weeks roll by so fast now! I’ve been meaning to blog about a gentleman I met a couple of weeks ago when I was out of town but I’m just now finding the time.  Anyway, during my trip, I noticed that the driver of our hotel shuttle had a CI. He wore a CI in one ear and a hearing aid in the other. It turns out he had lost his hearing suddenly as an adult and has very little residual hearing left in one ear (the aided one). He received a CI about a year ago in the profound ear. As you can imagine, I had more and more questions for him each day when he arrived to take me and my colleagues back to our hotel. I'm sure he was glad when the week was over! ;)

My biggest question was about the difference in the way he hears. Throughout our journey, this has been described to me many different ways and I’ve done my research and listened to simulations, but I’m still a little uncertain. My new friend described hearing with a CI as “fine-tuned” and “incredibly clear”. He went on to state that he can hear things now that he would have never heard before and actually said that he prefers to hear with a CI. Wow – really?! Interesting, to say the very least. I know this is only one person’s experience, but it was very encouraging to hear. It just makes me even more certain we made the right choice for Sophie.  I’m sure I was walking around with a silly grin on my face right after he told me that. :)

Not too much more to update, other than Sophie is continuing to do great! She has a growing vocabulary and is saying more each day. Today, she just blurted out “flower!” I was picking her up from the sitter and she was pointing to a picture on the wall of a flower. Of course, I thought nothing of it until we got home and I started showing her pictures of flowers and she kept saying it. “FLOW-LER!” Clear as day, just with two l’s. Super cute, though! Seriously, isn’t that a pretty tough word for a 14-month-old to say? She just continues to amaze me. Silly girl.