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.

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:

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!

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:

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. 

The floodgates are open...

And the words are pouring out of Sophie's mouth! She is just picking up so much more than I had ever imagined. Earlier this week, I went into her room in the morning to get her up and she popped up in her crib, pointed to her bookshelf, and said, "book!". I think my heart may have skipped a beat, I was so surprised. The "k" was questionable, but she definitely meant "book". :) After I put her CIs on, she started walking all around her room pointing out her books and saying "book" over and over again. Oh my, is this really happening?!  I just stood there, frozen and staring for a moment. I guess I was so surprised because "book" has not been a word that we continually label to her, we just usually say it in passing. She definitely knows the word, but I hadn't been coaxing her to say it at all.  

I am just beside myself with happiness over how well Sophie is doing. We have had so many great days lately and I feel like we are in such a good place. It's been a very long time since I've been upset and found myself crying over Sophie's hearing loss. Little things in our daily life can be frustrating, but it is all worth it when I see my girl walking around her room, pointing and shouting, "book!".

On another note, I'm a little nervous because I will be out of town this entire next week for work and I've never been away from Sophie for more than a night. Also, I'm afraid of what words I may miss! I don't want to miss her saying anything new. :( My hubby has our phones ready to video chat, so hopefully that will make it better. Let's just hope this business trip goes by fast and painless!

I hope everyone has a great week!

Well, she can definitely hear!

We had our first sound booth testing today since Sophie was activated and it went great! She has been responding to very soft sounds at home and I was pretty sure we would get good results, but I was still a little nervous. Anyway, our little girl is hearing at 15-20 dB across all frequencies!!! For those of you who may not understand what this means, here are some common sounds and the corresponding noise level:

breathing:10 dB
a whisper: 25 dB
ticking watch: 30dB
normal conversation: 55-75 dB
jet engine: 120 dB

So, as you can imagine, we are ecstatic! With her devices on, she is hearing within the normal range. Jared and I were both in the sound booth during the testing and there was a time when I didn't even realize Amy's voice (our audiologist) was coming through the speakers until Sophie turned and pointed her finger. At that moment, I just smiled and shook my head in utter amazement. Wow. Our baby, who was responding to speech between 100-115 dB unaided, can pick up less than a whisper. Birds chirping, refrigerator humming, leaves rustling, water dripping - you name it. Sophie can hear it. What a miracle!

She has gone from complete silence...

to the hearing world!

We are thrilled with her test results and so excited for the future. I remember a time when I was nervous about Sophie getting CIs at such a young age and wondered if we were doing the right thing.  I am so happy we made this decision and fought so hard for it. I have no regrets! Of course, we owe Sophie's success to all of the wonderful and knowledgeable women at the Moog Center. They are truly amazing and I am forever grateful for all of the encouragement and support we have received along the way. Thank you ladies, for holding my hand throughout this journey and always making me feel "normal." ;)

Now, let me leave you with a couple clips of my girl saying "uh-oh!" (Which is really more like "huh-ooh", but I'm sure you get the idea)