Four Years

A few weeks ago, we took some time to celebrate Sophie's hearing birthday. It's been four years since the cold January morning that we referred to as "activation day" forever changed our lives. Initially, our early CI days were full of hard work, intense therapy, and lots of audiology appointments. Although we are still on an ever-evolving journey with a deaf child, life is quite different now. Our days no longer center around CIs and therapy and instead our biggest worries are consistent with those of parents of typical children. Sophie's language skills are pretty amazing and people are often surprised when they learn of her hearing loss.

For this year's hearing celebration, we spent time with family and Sophie chose her favorite dinner of quesadillas and ice cream cake. We also took a trip to a local children's museum and had a day of fun. I took a short video of her, similar to the one I posted last year. I hope to "interview" her each year on her hearing birthday; at least until she will no longer let me. :) Here's to four years!

Perspective

It's hard to admit that an entire year has come and gone since I last posted here. It's not that I haven't had any news to write about or have been too busy (although life is quite busy these days), I guess I just haven't felt like it. This past year has been an emotional roller-coaster for me and my family, as we lost my mother to cancer. It wasn't really a roller-coaster; it was more free fall, with us desperately trying to grasp onto tiny bits of hope for a few short months although we knew the finality of what we were facing in the end. Cancer sucks, folks. There is nothing more ruthless, unforgiving, and consuming. And it's just not fair.

As I continue to grieve and slowly start to heal,  I am able to recognize one thing that this life experience has helped me with - perspective. Attitude, point-of-view, outlook on life... Whatever you want to call it. When Sophie was born and we had gotten over the initial shock and anger of learning about her hearing loss, I thought I had gained a new perspective on what is really important in life. At the time, it was the most difficult obstacle I had encountered and I felt shaken and changed by it, in a good way though. This past year has been even more eye-opening and I can honestly say that I have a deeper appreciation for everything I have and everyone that has been by my side. I'm not saying that I owe this deeper appreciation to cancer or even admitting that anything positive has come from this terrible experience.  I just think it's important to recognize how tragedy molds us into different people than we were before. We are humbled by hard times and grow stronger because of them.

So with the start of this new year, I will be trying my hardest to focus on my new perspective and everything I am grateful for. I have plenty of updates to share about Sophie and her sweet little brother and I will post those soon.

Cheers to a new year and a new outlook.

Three Years of Hearing!!

I think it's safe to say that's it has been some time since my last post! Life has been a whirlwind lately and I don't see it calming down anytime soon. In the last six months I have had a baby, started a new job, moved into a new home, and have been navigating through the trials and tribulations of a serious family illness. Life is busy, to say the least.

In the midst of all the craziness, we took some time last week to celebrate Sophie's hearing birthday! It's been three years since her implants were activated and she first heard the amazing sounds of the world. She has achieved so much in just a few years and I can only imagine what else she is going to accomplish as she gets older. Activation day brought us so much hope and excitement, but I never would have guessed how much she would excel. When I look back and reflect on our journey, it is pretty surreal. One of the best parts of parenting such a special child is sharing our story with others and giving them hope. If I had only known where we would be today, those early days would have been much easier and my tears would have been saved for another day.

Here is a little clip of our girl, just three years in to her journey. Isn't it amazing?

Introducing...

Our newest addition, a little BOY!!!

David Ryan

7/5/2013

8 pounds, 14 ounces

 

Needless to say, he has captured our hearts and we are in love! Everyone is adjusting quite well as a new family of four and Sophie is a great big sister. She wants to hold and kiss him constantly and help with everything having to do with her new little brother.

 

Unlike his big sister, David can hear. While most people are delighted when we share this news, it is extremely bittersweet to me. For many reasons, this feeling is hard to explain and I think only a fellow hearing loss mom may fully understand. To me, Sophie is absolutely perfect and such a special little girl. Some may consider her deafness a flaw or a burden, but I think it makes her even more amazing. Although we feel a bit of relief that David's early years will not be spent juggling therapy appointments, it feels wrong to rejoice that he lacks the trait making Sophie so special to us. Also, a part of me would like her to have someone to share her struggles with as she gets older - someone who understands what it is like to be deaf. I know that one day soon she will ask me about David's ears and wonder if he will also be getting implants. These questions are easy to answer now because she is only three, but I know they will become harder in the future.

 

One thing I am certain of as a type this update - I will love and treasure both of these kiddos with all of my heart for the rest of my life. They are both special and I know they will encounter individual and unique struggles, hearing or not.

 

 

 

 

 





A graduate?! Already?

Yes, folks - it's true. On Friday, Sophie GRADUATED from the Moog Center for Deaf Education. Quite an accomplishment for a profoundly deaf child who just recently turned three years old. While we are over-the-moon excited, happy, and proud, it was also a sad day to close this chapter of our journey.

I'll never forget my first conversation with the director of the Moog Center. She contacted me just two days after we learned that Sophie is deaf. I was still grieving - in a mixed state of panic, confusion, and shock. What I remember most about our conversation is that she was so incredibly confident that Sophie would be okay.  She gave me the straight-forward facts about hearing loss and the potential causes, summarized the cochlear implant process and timeline, and told me about their intensive oral program. At one point, I remember her matter-of-factly saying, "Oh yeah, there is a great chance Sophie can be mainstreamed by kindergarten." That statement gave me instant hope and was the very faint glimmer of light that I needed to snap out of my sad, gloomy haze and take action. Up until that point, when I envisioned Sophie's future, I could only think of a world of special education, interpreters, and limitations. I had already researched a bit about cochlear implants, but I was still naive and ignorant to what a diagnosis of profound hearing loss meant for Sophie.

The next day was our first visit to the Moog Center. It was surreal. As we pushed our tiny baby girl through the halls and classrooms in her stroller, I remember thinking, "Wow, they really weren't kidding. These kids can talk!" But that wasn't even the best part of the visit. After being scared, helpless, and overwhelmed, I just felt normal while we were there. It was as though the hurricane had stopped pounding and the debris was starting to settle all around me. Like I could envision a new path and future that I so recently was unsure of.

After our visit, I was pretty much sold. We visited another oral school in the St. Louis area as well, but there was no comparison to the feelings of hope and support that the Moog Center gave us. In the past three years, this amazing school has been by our side constantly - providing encouragement and support every step along the way. The staff, audiologists, and teachers are more to us than the professionals that have guided Sophie's success, they are forever a part of her journey and our family.

So here we are now, saying goodbye. Obviously, this transition is happening much sooner than we anticipated and I still cannot believe Sophie is being mainstreamed two years earlier than our original goal. While I'm nervous and anxious, I'm confident that Sophie's time at Moog has equipped her for a regular classroom on a full time basis. She is such a bright girl and has amazed us each and every step of the way so far. At this point, I can't wait to see what else she has in store for us. ;)

How fast her time at Moog has gone by:

First day of Moog - 17 months old

Last day of Moog - 3 years old

Here are a few more pictures of Sophie's big day:

Singing with her class

All alone on stage - brave girl!

Sophie and the other graduates

We love Moog!

Such a bittersweet day

The first of many amazing achievements for this girl

My dad also filmed Sophie being "interviewed" during graduation. All of the children leaving the Moog Center take the stage to tell their story and this is always a very emotional part of the program, as many families have moved across the country and completely started new lives to attend school here. Obviously, Sophie is a little young to be able to share her story, but she took the stage and it was pretty cute. I could tell she was nervous and I was quite surprised she spoke at all in front of that many people!

Let's hope that habit of pulling up her dress when nervous doesn't continue for too long! ;)

Anyway, we are on to a new chapter soon. We are so proud and can't wait to see what preschool holds for Sophie. Although we are sad to be leaving Moog, everyone there assures us that she is ready and will do great. Here's to new adventures!

Constant entertainment

There isn't much point to this video I'm posting below, other than the fact that it makes me smile and could be a source of instant embarrassment 10 years from now. I've found that one of the great things about parenting a three year old is that my life is filled with senseless humor! Sophie is a constant goofball nowadays, always acting silly and trying to play tricks. I love it!

Happy 3rd Birthday!!!

Sophie turned three last week and we had fun celebrating for days! We were also hit with over a foot of snow, so her birthday party had to be postponed a few days, but we had a great time anyway. Here are a few pictures from the festivities:

Excited to take birthday treats to school!

Circus fun! The fireman clown wears implants, too!

Cheese!

Birthday party!

A great addition to her new room!

Yum!

Sugar rush

So proud to be three!



I can't believe we have a three-year-old on our hands now. These days are certainly fun, though! Sophie is learning new things at a rapid pace and I feel like I can hardly keep up with her.

Happy 3rd Birthday to my sweet girl! I am so proud of you!!!

No IEP for this girl

Since Sophie was born, she has been receiving services through the First Steps program through our state. First Steps is an early intervention program that provides services to children (and their families) from birth to age three. When she was diagnosed with profound hearing loss, we automatically qualified for this program because deafness is considered a developmental disability.

At age three, the First Steps program ends and children that continue to need services are placed on an IEP (individualized education program) through their local school district. In children with hearing loss, this usually means that the district will provide a teacher of the deaf, ongoing speech therapy, or cover schooling at an oral deaf school if the district cannot accommodate the child.

When Sophie was a baby, I had researched a lot about this transition process, talked to other parents, and generally just assumed she would automatically qualify for services through our school district because she is deaf. Well, I was wrong. ;) Sophie's speech and language development was evaluated a couple of months ago by our school district in preparation for the IEP process. Before the district can determine eligibility, they must first evaluate each child to determine where they are at developmentally.

Because we have no other concerns with Sophie's development (academically, socially, physically, etc...), she was only evaluated on her speech and language abilities. The evaluation itself was SEVERAL hours long and had to be completed on two separate days. I was pretty emotional and anxious about the results and looking back, I still can't quite pinpoint why I was such a nervous wreck about it. I think much of it had to do with feeling as though all of our time, effort, hard work, and tears for the past three years were leading up to this judgment of whether or not our child qualified for special services because she exhibits a language delay.

Anyway, it suffices to say that Sophie does not qualify for services through our school district, so we will not be going down the IEP road. In fact, I can confidently say that her language abilities blew the school district away and it was hard for them to fathom that a deaf child could speak so well and demonstrate the advanced language and communication concepts that Sophie does.

To give an idea, a couple of the formal tests that were administered included the Goldman-Fristoe Test of Articulation (GFTA-2) and the Preschool Language Scale 5 (PLS-5). On the GFTA-2, Sophie's score fell into the 92nd percentile, meaning that she performed better than 92% of typical hearing children in her age range. Her test-age equivalent shows that she performed similarly to a child who is 4 years and 7 months of age (she was tested at 2 years, 9 months)! Her total score on the PLS-5 was in the 99th percentile, indicating she performed better than 99% of hearing children in her age range.

Similar to the ABR testing and meeting informing us that Sophie is deaf, this meeting with the school district was very surreal to me. As they were going over the test results and telling me that my child is a phenomenon, I just kept thinking that it had to be a dream. I know that Sophie is incredibly smart and her language development is on track, but I still just kept wondering, "how is it possible that a deaf child can score this high on these tests?!" As the meeting went on, I continued to sit there and wonder when they were going to break the news to me, to tell me where they have major areas of concerns, where her delays are, etc... But it never came. The conclusion was that Sophie's progress has been simply amazing.

Needless so say, I felt like I was floating as I was leaving the meeting and for the rest of that day I was on cloud nine. There are many reasons behind her success such as early intervention, advocating hard for early implant surgery, dedication, and most importantly, the incredible audiology team, staff, and teachers at the Moog Center. Whatever the reason, the feeling of success and amount of pride I have is immense.

Halfway there!

I don't know if it's because we are busy keeping up with a toddler this time around, but this pregnancy has absolutely flown by! We only have about four more months until we welcome this little one. Thankfully, Sophie has been getting pretty excited for the new arrival. It took some convincing at first, but she is really looking forward to becoming a big sister.

Striking a pose with Mommy - 20 weeks!

Helping Daddy get her big girl room ready

 

We aren't finding out the gender, but Sophie is convinced she will be getting a little sister. We'll see - she may have a big surprise coming in a few months! Anyway, one of the cute things she has been talking about lately is all of the things she will teach her brother or sister. One of my favorites has been, "When our baby comes out, I'm going to teach her to talk!" Amen to that, girlfriend! And this baby is lucky to have the best language model we could ask for. :)

An amazing year

Yesterday, we celebrated Sophie's second hearing birthday. I can hardly believe it has been two years since her implants we activated! The time has gone by fast, but she has accomplished so much in these short two years and I honestly cannot believe how much progress she had made.

If I had to describe this past year, I'm pretty sure I could do so with one word. Normalcy. I remember speaking to several moms when Sophie was just diagnosed and many of them had deaf children who were a bit older. They told me that eventually I will stop feeling overwhelmed and like my life was turned upside down. And I'll admit - the first year was HARD. We were still learning to be parents, but also learning to be a part of this new world that was absolutely foreign to us. Hearing aids, speech therapy, preparing for implant surgery, and constant worry about the future. The second year was exciting, but also very difficult. Sophie had been implanted and we were working with her each and every day to grow her vocabulary and language skills. It was a fun time as we celebrated each milestone with great enthusiasm, but I still felt a lot of pressure and was worried about the future. This past year has honestly been a breeze and I totally understand what those wise moms were telling me in the beginning of our journey. We have this down. I hardly think twice about Sophie being deaf. She is just a typical toddler that hears differently than most people do. This year has shown me that I have no reason to worry about the future anymore. She is already a success and not even three years old! We have a incredibly smart little girl who is going to do great things in this world and I can't wait to watch her.

Anyway, we have definitely returned to normalcy. The weight of worry being lifted off my shoulders has been exhilarating. I know I will always worry a little as Sophie faces new changes and challenges, but nothing like the beginning of this journey where even the little things were uncertain. We are in such a great place right now and feel like we can move forward with life - especially with welcoming a second child later this year! ;)

While we will always celebrate Sophie's hearing birthday, I feel like this one was extra special because it marked this turning point for us. Who knows what the next year will bring!

Happy 2nd Hearing Birthday, Sophie!!

BIG News for 2013!!!

Sophie has quite the secret that she has been anxious to share:

What an exciting year 2013 will be! We are expecting baby number two at the beginning of July and couldn't be more thrilled. :)

 Happy New Year, everyone!!!

Wishing you and yours...

The night before Christmas...

Or in this case, two nights before the big day!! My husband has been reading Sophie this book for the past few weeks and she has the entire story memorized. She even runs around the house reciting verses to her baby dolls. Tonight, I had to take the opportunity to get a little bit on tape:

Who's the boss?

On this lazy Saturday morning, I had actually had chance to document one of the many silly conversations heard around our house. Two-year-old reasoning never fails to amuse me. :)

We're still here!

So much for blogging weekly, huh? It's been so long that I forgot my Blogger password. ;) Anyway, we are still here! We have had some pretty exciting and crazy things going on lately, but I will save that for a later post.

It's now my absolute favorite time of the year and we are busy getting ready for the holiday season. Sophie is at a really fun age and is super excited about all things related to Christmas. She tears through the house singing Christmas songs and demands to drive by the "silly house with LOTS of lights" on our way home each night. You should see this house though, it really puts the Griswolds to shame!

In other news, Sophie's time at the Moog Center will most likely be coming to end much sooner than we originally thought. She will continue to attend next semester, but may likely be mainstreamed after that. While we are extremely proud of her success, I feel a little indifferent about this change. We have been with Moog since Sophie was four weeks old and they have been an incredible support system in many ways. I know that we have the tools to ensure that she will continue to succeed, but it is still a bit scary.

In light of this, we have begun to research different pre-school options for Sophie. Obviously, we are concerned about finding the right environment that will help accommodate her hearing loss, but we are also concerned with keeping her challenged and engaged. Many of the professionals that have worked with Sophie have told us she is highly intelligent, maybe even gifted. At this point, we are trying to research all of our mainstream options (public, private, Montessori, etc...) and hope to find the perfect fit. If there are any parents out there with gifted kids, please give me your advice!!! :)

I hope everyone is having fun this time of year. Here are a few holiday pics so far:

Fall Photo Dump

Here are a few of my favorite pics so far this season. I'm sure there will be more!

Pinch me

“I continue to believe that if children are given the necessary tools to succeed, they will succeed beyond their wildest dreams!”

 

 

When Sophie was diagnosed with hearing loss and we began to research cochlear implants, we were told that the best case scenario will be mainstreaming her by kindergarten or shortly after. At that time, we set that as our goal and were pretty happy with the fact that she may be able to go to a regular school like a typical hearing child. We figured it would be a tough five years, but with hard work and the right resources, we could definitely make it happen.

 

I can say now, only two and a half years in, that Sophie is excelling beyond what we ever could have imagined and will definitely exceed this goal. About a month ago, we were approached by the director of Sophie's daycare/preschool because she really wasn't sure what to do with Sophie anymore. Sophie was in a class with other two-year-olds, but her language and social abilities were so far beyond the others. The director wanted to move her up with the three-year-olds and after some thought, we agreed to do so. I was a little hesitant because she wasn't yet two and a half and there can be a big development gap in that age range, but I knew she was ready. So, she has been with the "big kids" for a few weeks now and is doing great. Have I mentioned yet that this is a mainstream school?! Sophie is the only deaf child there and the director continues to tell us she is one of the best talkers among the three-year-olds.

 

Some days, I can hardly believe she is doing this well and I feel like we are living in a dream. Just a short time ago, we were so uncertain and worried about what her future would bring and now she is thriving in a mainstream setting with children who are older than her. Sophie still goes to her deaf school part-time and is excelling there as well. At this point, my uncertainty about the future has diminished and pride has taken over in it's place. I know that she will encounter many other hurdles in life, but I also know that she is a very special and talented child who will continue to excel and surprise us along the way.

Who's your sunshine?!

I just have a quick video to share. This made me laugh earlier:

She sure loves her babies!

I have been really behind on blogging the past few months, but I have a couple of weeks off work and hope to get caught up!

I hope everyone is enjoying the nice fall weather. :)

Walk4Hearing

This past weekend we participated in the Walk4Hearing in St. Louis and it was so much fun! It was the first year that we took part in this event and I'm so happy we did. Sophie didn't quite grasp the purpose of the walk, but she was super excited and spent the entire morning running around the house screaming,  "Walk for hearing, walk for hearing!"

Despite the chilly weather, we had a great turnout and helped raise over $30,000 for the HLAA. I was really touched by the number of our friends and family members that joined us for the walk and donated to the cause. I tried to get a good group shot of Sophie's entourage, but of course I ended up missing a few people.

We plan on participating in this event every year and I hope it becomes something that Sophie is passionate about and looks forward to.

A big thank you goes out to everyone that supported us last weekend - we appreciate it!

Then and now

I haven't updated in quite a while, but I've been trying to stay off the computer and just enjoy life! What did we do before laptops, data plans, email, Facebook, and Twitter?! ;)

Anyway, Sophie started back up at her deaf school last week and we are starting to get back in the swing of things! She's always super excited to go and loves talking about her new teacher and her old friends.

This is a picture of her on her first day:

And this was last year:

What a difference, right?! She has grown so much (in many, many ways) and I can hardly believe the obstacles we have overcome with this little munchkin. She is definitely just a typical toddler who loves to chat, sing, pretend, and asks a MILLION questions a day. Even with all the reassurance and encouragement we received about CIs when Sophie was a newborn, I never would have imagined she would be doing this well. We are very, very lucky and she helps remind me of that fact every day.

I hope everyone had a great summer and start to the school year. I'm excited for fall and can't wait for the weather to cool down and stay that way. Fall is definitely my favorite time of the year!

I tried to get Sophie on video singing some of the new songs she has been learning at daycare, but she is quite the stubborn girl and prefers to stick to the old classics. Still cute, though!

Happy Fall!!!