Wednesday, March 6, 2013

A Year Has Passed and A Bump in the Road

I like to say that a year can make all the difference in the world. A new job, a new boyfriend, a baby. For Hannah, it's the gift of hearing. A year ago, Hannah went from not being able to hear a word to having full access to sound. It was a year ago, our little lady underwent five hours of cochlear implant surgery and now can hear Sam's meows, water splashing, birds chirping, the ice cream truck and Michael and I saying I love you. Hannah can tell you her favorite color (pink or purple), request her favorite song (Wheels on The Bus), can count to ten and loves to hear the toaster ding in the morning, letting her know her waffles are ready. 

Hannah after her surgery on Feb. 29, 2012

I know I haven't blogged in some time to document all of Hannah's accomplishments. Michael and I get to witness such miracles in our every day life. While I had no idea what would be in store, looking back on this past year I'm just so happy for Hannah and so grateful for the amazing support we have received. Hannah is so lucky to have Liz, her amazing speech therapist at the Children's Hearing Institute that pushes all of Hannah's buttons and is really so dedicated to her success. She also has an amazing family support system who teach her new words all the time. On a recent visit to CHI, we were driving along the FDR and Hannah shouted "tunnel, tunnel" when we drove under bridge. I thought I was hearing some baby babble but when we were through, she said, "Bye bye tunnel". I told this to my mom and she takes full credit as she taught her the word on a recent Monday adventure.

Hannah cheering on the Yankees in the 9th inning

Hannah has become a lover of music and is so excited each week while at her music class. She likes to sit next to her teacher, Miss Sara and try out all the instruments. She is learning all the names, saying bye bye cymbals or guitar. Her teacher told me that she loves having Hannah in class and said Hannah is really advanced in her talking.  Furthermore, Hannah is getting ready for her first New Orleans JazzFest, where she will be able showoff her musical prowess. 

Hannah is such an amazing little girl with a zest for life and learning and she shows no fear and knows no bounds. She's talking and singing her way through the city streets. She has lead many on her renditions of ABCs and Wheels on the Bus, leading her charges by enthusiastically waving her arms in the air. She can string words together, her first real sentence was at Christmas at Uncle Pat and Aunt Christine's house, saying, "I want more candy please" while pointing to a bowl of M&M's. Most recently, Hannah was getting ready to go out with Grandma and Grandpa and she was putting on her mittens but only could find one. She told them, "I want two." Hannah is also really amazing at remember names and I have a feeling she will be an amazing leader in whatever she does. She always calls her friends by their names and greets the doormen by name when she's coming and going. Hannah  has a bevy of words to choose from and has come such a long way from her first word, "up". Right now she is repeating back everything and tackles hard words such as xylophone and edamame.

Also, one-year post her cochlear implant surgery young Miss Hannah is enrolled in a mainstream 2s program with the Early Learning Foundations School on York Avenue. She will be attending classes here in September on Tuesdays and Fridays from 8:45 to 11:45 am. We will have to work on revamping her speech schedule but hopefully we will leave room for some fun.

Singing Wheels on the Bus

Hannah, February 2013

Unfortunately, we recently hit a snag in our journey, what they call a bump in the road. We had an appointment today with her ENT and we confirmed Hannah has an internal stitch near her implant device that is infected and and has become exposed. He is going to have to surgically clean it up. Not the news we wanted on the one-year anniversary of her first surgery. We set the date today for a second surgery on March 11. While we are hopeful that it is only the stitch and the doctor won't find anything wrong with the implant. There is a chance the area around the device is also impacted and he will have to temporarily remove the device. Fortunately she will be able to hear with her right ear while she heals. I'm trying hard to remain positive that it will just be the stitch and hopefully we can put her left processor back soon.

Until then, we will continue to be amazed on a daily basis by our little angel.

Tuesday, October 2, 2012

Walk4Hearing and Team Hannah

Michael and I, and most of all Hannah, would like to thank all of our amazing friends and family who supported us on the fifth annual Walk4Hearing. Our hearts have truly been touched and we are so humbled and overwhelmed by the outpouring of  kindness and generosity over the past several weeks. Hannah is surely one lucky girl and we know how blessed we are. We raised almost $12,000 for The Children's Hearing Institute and The Hearing Loss Association of America and we were one of the top fundraising teams in the country. The money we raised will be used to help provide the resources and services as well as improve the quality of life for all our friends and community who have a hearing loss.

The day was a beautiful fall day, cool and crisp and thankfully sunny.  Well over a thousand gathered at 101st Street in Riverside Park to march the 3 miles together in solidarity. What is most amazing to us about the day is that in the New York area, there are many places children can receive speech therapy and other services (and Hannah has been to a number of them), so it's great to see all the families come together as one. It gives the chance for the kiddos to see each other and the parents to reconnect after a busy summer.

Personally for Michael and I, it was just amazing to see how much Hannah has grown in the year since we walked with everyone last year. In 2011, when Hannah was only about 4 months old, we were so new to the deaf and hard of hearing community. We heard about the walk about a week prior and went not knowing what to expect. We clung to Laurie Hanin, the director of the Center for Hearing and Communication, who guided us through and showed us all the possibilities Hannah had in her future. We met MJ and his mom Eileen  -- and saw how easily MJ could hear in all the noise. We saw lots  of children with various hearing technologies charging up the path, excited to be part of the walk. This year, we're so proud of how much our little girl has grown. She was just one of the little kids skipping along the walk, enjoying her day in the sun with her friends and family. We ran into her little friends along the way and it was just amazing.

We also talked about how many words Hannah can now say.
Bye Bye
P p p...Please
I waaa...I want
Shhh...Whenever she sees anyone sleeping
BoopBooo...Beep Beep
WoooHooo...Her version of the siren

In addition, Hannah is a little songstress and can hum along to a variety of tunes and even fill in the words at times. The Itsy Bitsy Spider, The Wheels on the Bus, Twinkle Twinkle as well as Hello Hannah will elicit a huge smile followed by some Hannah singing and hand gesturing.

Here are some photos from the day Grandpa took. They do an amazing job capturing the day. Enjoy!

Michael, Hannah, me and Steph along the walk

As if the walk wasn't enough, Hannah played a little pickup hockey 

Hannah and Daddy

Team Hannah

Our girl

Hannah and me

Team Hannah

Give me an H


She didn't like his driving so she's going to push her way through the finish line

Thank you! Thank you! Thank you for your support and generosity!

Much love,
Jen, Michael and Hannah

Sunday, September 23, 2012

Mr. Met and AG Bell Fall Picnic

We spent this past weekend with oldish friends and new. We attended the New York Mets 6th annual Deaf and Hard of Hearing Awareness Day at Citi Field presented by the Children's Hearing Institute. It was an awesome afternoon with amazing families from CHI as well as Hannah's fabulous speech therapist Liz. The sun was shining bright, the sky was a perfect blue and we enjoyed Shake Shack while sitting in the Delta Club. Hannah even got a lift by Mr. Met. In all there were about 900 hard of hearing kiddos from schools from all over attending the game and some even signed the National Anthem. It was really amazing and Hannah loved running around the stadium. 
The Children's Hearing Institute's Hear-o's and Mr. Met

Hannah with Mr. Met but I know she is looking at the Yankee score.

On Sunday, it was another beautiful day and we drove out to Hartsdale, New York to attend the New York chapter of AG Bell's picnic. We got to meet lots of new families with hearing impaired children, all at different stages along their hearing journeys. It was great to see all the bigger kids play together, running around the park, screaming and laughing with each other. We're so lucky to be part of such a group with supportive families and Hannah can grow up having a great mix of kids in her life.

We're very excited for next Sunday and the Walk4Hearing. Go Team Hannah!

Wednesday, September 12, 2012

Meow...Introducing Sammy Cakes

There is one special little guy in Hannah's life. His name is Sam. Sam is our furry friend who was the first one to meet Hannah when she arrived home from the hospital and the first one Hannah smiled at when she opened her eyes after her cochlear implant surgery. He has been the most amazing little friend to Hannah, he's gentle and protective and has helped Hannah say MEOW.

Hannah's first visitor

Michael and I are animal lovers and Sam has enjoyed the years he was the king. But he has taken on his role as big brother with such grace. Hannah too sees Sam as her family. At lunch this week, we were sitting at the table and Hannah looked around and asked "Where?" I told her Sam was sleeping and asked her to turn to Sam's page in her little family photo book. Sure enough, she went right to it. I then showed her a small figurine of a cat and matched it to the picture of Sam. Hannah took the cat figurine from my hands, turned the page in her family photo album to the picture of the three of us and then added the cat figurine. So clever, so creative in her showing me how she sees her family.

A few weeks before, we were again eating. Sam was also eating, but in the kitchen. He let out a meow, probably trying to get in some extra treats. Without skipping a beat, Hannah meowed back to him. It was so cool.

I was told that having a pet will be an early indicator on how Hannah can hear. When the cat or dog or other animal makes a noise and the child reacts, you'll know she/he can hear. Seeing Hannah turn when she hears Sam meow is so endearing - seeing how happy he makes her and knowing that she hears him -- is always a reason to celebrate.

Today is Sammy's 8th birthday and we'll have a little ice cream party to celebrate.

Best buddies

Happy birthday Sammy Cakes! We love you!

Tuesday, September 11, 2012

FM System

Hannah received her FM system today. I've heard so many wonderful stories about it, how it can really help Hannah hear more clearly in noise, but right now I'm a bit concerned with even more technology.

The FM is a wireless system that will help Hannah better understand speech in noisy situations - while in her stroller, a classroom, a restaurant or the playground - and over distances within 50 feet. It works like this: The person speaking (her parents, a teacher, a coach) will wear the transmitter microphone or in our case, the transmitter can be placed in the middle of the group to pick up speech from all around. Then the system will use radio waves to send speech signals to Hannah who will be wearing a small receiver attached to her cochlear implant. The result is Hannah will hear the speaker's words directly in their ears, without any distracting background noise, allowing her to enjoy and participate fully in every conversation.

The FM system comes in two parts - a transmitter and receiver. Hannah will be using Phonak's SmartLink+ transmitter. It features 3 microphone models - superzoom, zoom and omni, the last which will provide a 360 degree setting that picks up sound from around the transmitter. This will be great for family dinners as we can place the transmitter on the table and it can pick up every one's voices.
The Transmitter

The Receiver

Hannah lives in New York City. We do a lot of walking and there is a lot to see and talk about. Unfortunately it's very noisy and hearing clearly can be a challenge for anyone and especially for Hannah. With the FM system I'm really looking forward to walking around with Hannah, showing her the sights and knowing she can hear me loud and clear through all the noise. It's a big relief.

Food Attacks and Grandma's Birthday

Fall has unofficially begun in New York City and the sidewalks are alive again. What better way to explore the kingdom and learn a little bit more about its history than a food walking tour. That's exactly what we took Hannah on over the weekend. We joined Sidewalks of New York for a and Hannah really went to town, devouring all the tasty treat along the way, including bagel, pizza, cupcakes, cannolis and rice balls.

This rice ball is delicious. I'll take ten.
Hannah will make a great cannoli tester.

And if that wasn't enough, a few hours later, Hannah got her BBQ on at Neely's to celebrate her grandma's birthday. Grandma got a special birthday treat this week - a hug from Hannah. What can be better. Hannah developed a particularly close bond with my mom this summer over the Itsy Bitsy Spider, their theme song. My mom would sing it and as she did Hannah would mimic all the hand gestures. This week the song has changed to the Wheels on the Bus and Hannah likes to fill in the blanks with words. This week at speech, Hannah has been playing with figurines representing Grandma and Grandpa, which she is enjoying immensely. She even gave the toy Grandma and kiss.

Happy birthday Grandma! Love you!

 Hannah's third dessert of the day. Life is rough.

Hope everyone enjoyed the weekend.

Tuesday, September 4, 2012

Hello September

Wow, how fast time really does fly! From the last time I've updated on Hannah's journey so much has happened.  I can now say I've gone from being a total nervous nellie to totally excited for Hannah. That's not to say that I'm not going to worry. If there is one thing Michael and I took away from the AG Bell conference in July is that you can never rest on your child's accomplishments. We need to stay vigilant and make sure Hannah is hitting all of her milestones. But as Hannah has progressed, I'm feeling a lot more comfortable teaching Hannah to talk, to listen and I have found my own way to be Hannah's mom, which I will get into later.

Most importantly, Hannah is progressing nicely and is flourishing. She is saying new words...such as  around, wait, please, to name a few...and is understanding simple commands like, "Hannah can you brush the baby's hair?" She is also amazing at discriminating between sounds, and able to pick out with ease which animals says BAAAA vs. MOOOO vs. QUACK QUACK. She also is an expert at Meow thanks to her kitty Sam. Last week we were at a baby yoga class when Hannah pulled a cat out of the bag and she proudly said Meow in front of the class. I was so proud.

Hannah is also letting us know when she hears things both in our apartment and outside. So when a plane whizzes past or a taxi goes beep, Hannah will point to her ear and approximate the words, "I hear it."

Another amazing achievement is her singing. Hannah has always loved music and music relaxes her. She has hummed the words to her Hello song and now she participates in songs like "If You're Happy and You Know It" by clapping her hands, patting her head when she listens to someone sing. She also says round and round and shhh shhh to the appropriate parts of "Wheels on The Bus."

Hannah is also walking, or rather running towards anything. We recently got her a baby doll stroller so she could push through the city. You can catch her walking with pride, waving to folks along the way. It's so cute to see.

I know all this progress came with a lot of hard work by Hannah and to the amazing speech therapy services she has been receiving. But we reached a point where we thought it was too much therapy and not enough time for Hannah to just be a kid.  While we increased speech services through EI at NYEE, we had to say good bye to the Center where Hannah began. We wanted  give her more time to go to story hours, museums, play in the park and get dirty. Hannah has an unbelievable zest for life, she is open to enjoying new experiences -- and living in Manhattan offers just that. I've learned so much over the past 15 months, more than I have ever learned about life and I know I can help her progress even further.  We have also enrolled Hannah in a couple of mainstream programs. She will be enjoying a musical animal adventures program at The Art Farms in the City as well as gymnastics at NY Kids Club.

We're really looking forward to the fall.