Sunday, August 11, 2013

2 Years Old

Madison turned 2 years old this past June.  We celebrated the same way we did a year ago, with a party on our building's rooftop.  We invited several of Madison’s friends, as well as her favorite character – ELMO!!!

Madison, a fun-loving 2 year old, loves to play with her friends.  She enjoys the sandbox, and even though the NYC heat is unbearable, Madison isn’t too crazy about the water park, she says “swing is better.”

We love that Madison has a few really good friends in the neighborhood.  She enjoys playing with this group, as well as going to the park everyday.  However, when little kids get together, their germs spread.  In early July, we had to take Madison to the ER with a 105 fever.  Yes, this is a high fever, but children with cochlear implants are more susceptible to getting meningitis.  When speaking with the on-call surgeon at NYU Otolarynology department, the doctor said, “If it was my child, I’d take her to the ER…now.”  Luckily, it was just a virus and she was fine a few days later, but as much as we try to treat Madison like every other kid, there will always be situations that arise in which we need to be careful.

Madison's speech and understanding has by far surpassed our expectations.  She amazes us every day.  She is talking up a storm.  Yes, she is even using sentences! She absolutely loves Sesame Street.  She knows all the characters…and this is just from reading books (and an occasional iPad application – still no television).  Madison sings the alphabet song when she brushes her teeth, and it’s so cute when she sometimes also sings the ABC’s when she’s laying in her crib.  She’ll just start singing random songs all over the place.  She enjoys playing with her “other” friends too– Catie the baby doll, Buddy the dog & Poe the monkey – and even has conversations with them, “Catie, would you like some tea?”  Always saying “please” and “thank you”, she’s a little chatterbox, as well as repeats so many things she hears.  She still has to work on her pronunciation, but she’s still just a 2-year old, and such a loveable 2-year old.

Madison is still receiving 6 hours of speech therapy a week.  Twice a week Michelle comes to our home for an hour for individual therapy.  Twice a week Madison goes to CHC – individual therapy followed by group session.  This will continue through the end of the summer.  The feedback we have received from all of her therapists has been extremely positive.  In fact, she no longer has any delays.  This is great news to receive, but it doesn’t mean we can toss everything aside.  It is extremely important to continue to push Madison (and ourselves) – this will set the foundation for her success once she begins school.

Starting in September, Madison will attend a 2’s program in the neighborhood - four mornings a week.  The Downtown Little School, is a mainstream nursery school located about a 10 minute walk from our apartment.  Madison will be in the classroom with 9 other children.  The school has never had a child with a hearing loss or cochlear implants.  The staff at CHC will be giving a brief presentation on hearing loss in the classroom prior to school starting.  We feel the 2’s program will help Madison socialize and become more independent.  During the school year, she will no longer attend group sessions at CHC, but will still receive 5 hours of individual speech therapy 5 times a week in the afternoons.

Madison’s language has been blossoming and we look forward to the strides she will continue to make over the upcoming year.

Sunday, February 10, 2013

Happy Birthday to my Ears!

February 9th, 2012 was activation day.  Madison's 'new ears' would be turned on.  For the very first time, Madison will be able to hear our voices, hear the sounds around the neighborhood, and hear us tell her how much we love her.  This was going to be a whole new world for her... and for us. And now, here we all are, February 9, year later. 

It really is truly amazing how much progress she has made.  Madison had an appointment on Friday at NYU Cochlear Implant Center with her audiologist, Alison and speech therapist, Rosemarie.  Madison was going to have her "1 year post activation" evaluation in the sound booth. 

The appointment began with Madison sitting on my lap with Rosemarie in a sound booth.  Brian and Alison were in another room.  There were two figures in the room I was in - a blue monkey playing drums on the right side and a yellow monkey playing drums on the left side.  Different electronic sounds (beeps and buzzes) were played at different decibel levels and Madison would turn to the side she heard the sound - when she acknowledged that she heard the sound the monkey would play the drum.  This was designed to condition the child (who is not yet speaking) to respond to a visual cue.  She passed the test on the left ear, but was very bored when it came time to testing the right ear.  They moved on to the next test that involved placing two items in front of Madison (i.e. Bunny "hop hop hop" and Airplane "Ahhhh").  Alison would make a sound (either "hop hop hop" or "Ahhhhh") and Madison would have to select the right item.  She had no interest in 'playing' this game.  We were asked if they incorporate this 'play' into her therapy at all and Brian and I said that they did this activity, a while ago.  We then said that they have moved on to the next step... now her therapist is having Madison repeat words and put a block into a basket after she hears it.  They were amazed, stating that is very advanced... but figured they would give it a try!  An actual piggy bank was placed in front of Madison with a stack of colored plastic coins.  She held a coin up to her ear.... Waited... Alison said the word "Shoe".  Madison repeated the word and put the coin in the bank! Madison than said, "I want more coins".  She was given another coin... held it up to her ear... and waited for the next word.  Alison said about 10-15 words.  Madison repeated all of them, with some pronunciation errors here and there.  Both the audiologist and speech therapist were amazed with Madison's responses.

Once the formal evaluation finished, we met in a conference to discuss her results.  Madison is hearing well with-in range of conversational speech (which is the target range for someone with a cochlear implant).  We were told that her expressive language exceeds that of other 20 month children, born with typical-hearing.  It was gratifying to receive this feedback.  We thank her wonderful therapists at CHC - Katilyn, Fara & Michelle... and are so incredibly lucky to have a caring, dedicated nanny, Gloria, who is an integral part to Madison's success.  Madison is one lucky girl to have so many family and friends who care deeply for her and just want her to be successful and achieve all that she aspires to... and we certainly believe that she will do so!

Her therapy schedule has stabilized into:
-       4 hours week at CHC (2 individual/2 group)
-       2 hours week at home

We know there is still a lot more ground to cover.  We were told that the surgery would be about 5% (CI technology), with the parents/caretakers and the therapy as the remaining 95%.  Brian and I are excited what this next year will bring and believe Madison will continue amazing us on this journey.


Tuesday, February 5, 2013

On The Right Path

January 25, 2012.  An important date in our lives.  It has been one year.  One year since Dr. Roland performed bilateral cochlear implant surgery on our 7 month old daughter.  I’d be lying if I told you I knew what to expect in those next 12 months.  Brian and I were confident that we made the right decision – to go ahead with spoken language – but what would transpire afterwards was going to be a mystery.   

The next few months were like a blur…therapy, mappings, music classes, gym classes, story times, etc.  Madison had a very busy schedule, and we are blessed to have so many amazing people in her life – that truly care about her well-being. 

I can’t tell you when Madison started ‘talking’ as her listening (and then comprehension) happened first.  Madison’s first word was definitely “Al” (our dog is Alan) and she would say “Ah” and point to her best friend.  Words then started to trickle in – “ma” then “mama” and “da” and “dada”. 

Brian and I had a meeting at CHC with her therapist, Kaitlyn, and the director, Lois, in the beginning of November to discuss Madison’s progress and review her upcoming goals.  We were asked to bring a list of words/phrases that Madison understands and words that Madison says.  We spent a good week or two compiling the list… Just when we thought we had completed the list, a few new words would come out of her little mouth.  Our ‘final’ list consisted of over 125 words that she understood and over 60 words that she actually says!  We were amazed.  The feedback from the meeting was positive… Madison was meeting and exceeding their expectations.  They continued to stress the importance of exposing her to as much language as possible – read books to her, narrate our day and just TALK.  We were told the goal for the next 6 months would be for Madison to combine two words (action and a noun – ie “baby down”) by the time she was two years old.  At the time, it seemed like a stretch…

The three of us took a vacation over Thanksgiving to Argentina, and Madison saw mountains for the first time.  Within a day, Madison was saying “mohnt-mohnt.”  It was adorable, but at the same time we were amazed how in just a matter of hours she was trying to describe something she has never ever seen before.  Looking back, we feel that this was the beginning of her ‘language explosion.’  Typical hearing children often go through this phase around the 18-month mark.  This is where a child will start saying or imitating new words every day.  I remember being told that children with a hearing loss usually don’t have a ‘language explosion’.  Every time a new word would blurt of her mouth it just made my heart melt.

After returning from our travels, Madison’s therapists then began to work on two words – “Put On/Take Off”…and my favorite “Al Move.”  Then, exactly 1 year from her surgery she uttered a three-word sentence, “I want more.”  We even have the footage to share!  The pronunciation needs work, but we are just so proud of her progress. 

Madison has quickly started staying 2 and 3 word phrases around the house over the past couple of weeks.  She is starting to combine words left and right.  Than, in music class past Saturday, she said “I want to play” as she was pointing towards a trombone the instructor was playing.  The mother next to me said, “Wow, that’s advanced.”  I just looked at Madison and smiled. 

Wednesday, October 17, 2012

NYC Walk4Hearing

On Sunday, September 30th we participated in the NYC Walk4Hearing.  Madison had several family members in town for the event… some even traveling across the country to see her.  The weather held out, and we had a nice day on Manhattan’s Upper West Side Riverside Park.  Here is a picture of her entourage during the walk:

A few other pics during the walk:

Madison & Cousin Julian

Madison & Olive

Madison & Cochlear Koala

After the walk, Brian and I hosted a fundraiser for friends, family and colleagues at a bar in Midtown to benefit the Center For Hearing and Communication (CHC).  Madison receives therapy at CHC multiple times a week, and has been going there since she was 6 weeks old.  We believe the therapists there do a fantastic job and are so grateful for everything they’ve done for Madison (and us).  They are able to offer their services to children & adults and funding is provided mainly through donations.

The fundraiser was a 2-hour event that consisted of an open bar and appetizers for $50.  Half the cost of the event went to the bar and the proceeds went to CHC.  In addition, we received numerous donations that we raffled off – signed sports posters, gift cards, books, wine, hotel stay - to name a few.  The raffle helped us raise even more money.   And we must not forget, Brian’s cousin designed T-shirts for the festivities, which were made & donated, by Campus Connection.  All proceeds went to CHC.  

All said and done, Madison raised over $10,000 that afternoon.  We are so appreciative for the gifts we received and are truly blessed by everyone’s generosity and support during this day.  


Sunday, September 16, 2012

Busier Than Ever

We were planning on posting a "six-month hearing” update documenting the progress of Madison last August, but the summer kept us busier than ever.  Here are some photos from our travels.

 Maryland - Baltimore National Aquarium 

 Delaware - Madison & Tessa BFF <3

 Illinois - Shedd Aquarium

 Grant Park

 Our former home in Chicago

Lincoln Park, Chicago

It’s truly amazing how quickly time goes by.  Last week, we had our annual meeting with New York Early Intervention.  It was definitely weird being back there, not to mention the meeting was held in the same conference room as last September – Brian and I sat in the very same seats – and surprisingly enough we were assigned the same agent!  However, while we were seated, about to get started I just started to reminisce about the past year.  My throat began to get heavy and my eyes began to tear up.  As I thought back to that day, goose bumps ran down my spine.  I didn’t expect to have these feelings….  Twelve months ago, we were sitting in this same room in a completely different state of mind.  I don’t think Brian or I had any idea of what would transpire over the next year.  Madison had her surgery in January, and was activated in February.  Now, seven months post-activation we were discussing the goals that we had set for her back in September of 2011.  Has Madison reached these goals?  How does she compare to her hearing peers? What are our new goals?  Reflecting back, it is pretty darn impressive how far she has come and how much she has progressed.  Madison is such a determined little girl and she continues to amaze Brian and I every day.  But before we go into detail about her progress, the best part of the meeting was that Madison was approved for an increase in home-based service to twice a week with Michelle (speech therapist through Center for Hearing and Communications).  We are so happy about this!

So, six seven months into hearing, Madison has a vocabulary of approximately 14 words:

  •        Mama
  •        Dada
  •        Al (Alan…all dogs are called “Al” )
  •       Up (by far and away her favorite word)
  •        Bubb (Bubbles)
  •        Buh Buh (Bye Bye)
  •     Babe (baby)
  •         Muh (more)
  •         Miiik (milk)
  •         Umm-Pa  (Grandpa)
  •         App-uh (apple)
  •         Ba-ba (the name she gave her Paci)
  •         Eeeey (Yes)
  •     Yeahoo (Yellow)

She’s definitely doing a great job of listening and following directions.  For example, “Madison can you pick up the block and give it to Daddy.”  That statement has multiple commands and she is easily able to comprehend that.    

We’ve also been working on body parts with her.  She does very well with some, but many of them involve movements (i.e. wash your ‘hands’, kick your ‘feet’, brush your ‘teeth’).  She knows her head, ears, eyes, nose (although sometimes this is confused with the word “NO”), teeth, mouth, tongue, bellybutton, hands, fingers, knees, feet, toes.   She also needs to learn where her ‘shoulder’ is, as she’s always touching her knee, but hopefully if we sing the song enough to her, she’ll get the hang of it.

Madison is also doing very well discriminating her sounds – “Moo” for cow and “Quack Quack” for duck.  She even will pick up the cow and go “Moo” or pick up a horse and make the tongue-clicking sound.  We brought Madison to the American Museum of Natural History a few weeks ago and she was so excited to see the elephants.  She kept making the noise while she pointed them to us.  So cute!  There is a fire station around the block from our apartment, so every now and then a fire truck passes by the street.  Madison will point to her ears and let us know she hears the sound.  She has just started imitating the sound, making a “oooh oohhhhh ooooohhh oohhh” noise, when she plays with her toy fire truck. 

As well as Madison is doing in therapy, one of the suggestions we received from her therapists was to expose her to children outside of the hearing-loss community.  In the past, this was difficult to do.  I had always wanted to enroll Madison in a play-class, but her schedule never really allowed it.  The first year of her life, we were busy running around taking Madison to doctor appointments, audiology visits, therapy sessions, sound booth visits, etc  The list was endless.  Starting this fall, Madison’s schedule will finally allow for some FUN!  Every Monday, Madison will go to CHC from 9-11 and see Kaitlyn for speech therapy followed by a group session run by Farah.  On Tuesdays, Madison has story time at BPC Library in the morning and in the afternoon she has her private speech therapy with Michelle in our home.  Wednesday rolls around and Madison heads back to CHC from 9-11, in the afternoon she has a Gymboree class at 3pm.  This is convenient because the location is right outside our building and will not have to travel far come winter months.  Thursday begins with story time at Tribeca library and Michelle in the home for a speech session.  On Fridays, Madison has Clarke group therapy in the morning, followed by two play groups with babies in the neighborhood that afternoon.  Oh and if her schedule isn’t busy enough… On Saturdays Madison has music class with Brian and I.   We are glad that Madison will be able to finally balance her time between work and play.  

Madison is quite distracted with the video camera, but here is a quick snip... Enjoy!

Madison - 14 months old:

Madison - 15 months old:

Sunday, July 29, 2012

July 26, 2011

July 26, 2011… is a day that Brian and I will never forget.   The way we view the world was going to change before us.  It was exactly one year ago today we were told Madison has a profound hearing loss.  The absolute WORST day of my life.  When I think back to that day, my stomach turns, my throat starts to close up and my eyes start to tear…. I wonder at times if these feelings will always remain a part of me when I reflect.

It was a sunny day, bright blue sky above and a warm summer breeze in the air… we headed off to Cornell for Madison’s diagnostic ABR testing.  My mother joined Brian and I for the appointment.  The three of us sat in a small dark room with the audiologist.  Earphones were placed into Madison’s tiny ears and stickers were placed on her forehead.  Madison was in a deep sleep and did not flinch the entire time we were in the room.  We were happy that she was so well behaved… but deep down inside we knew that something was not right.  We were clinging onto every moment of hope.  Little eye contact was made between Brian, myself or my mother – we all had our eyes glued onto our beautiful little girl…. Waiting for Madison to make a reaction to the sounds being pumped into the earphones.  A flinch, sigh, deep breath? Nothing.  The sounds continued to get louder and louder to the point where we were able to hear them ourselves.  Yet Madison continued to stay sound asleep.  All of our hope had completely vanished.  It was only a matter of time until everything truly became a reality.  The audiologist told us that she would be able to meet with us in 45 minutes for the results.  We were glad that we didn’t have to come back the following day.  We strolled along the streets of the upper east side in Manhattan, there was little conversation… I think all of us had the same thoughts going through our heads.

We arrived back to the office, which was down the block from where we went for the actual testing.  The audiologist greeted us and took us down a few hallways than brought us into a tiny room with a circular table and three chairs.  There were three tissue boxes spaced out across the table.  I broke down in tears and sobbed before any words were exchanged.  I wasn’t able to  make any eye contact with Brian or my mother.  All of us were sitting in our chairs crying.  My heart was broken and new motherhood bliss had quickly vanished.  It felt as if Brian and I were pushed out to sea on a tiny wooden boat (with Madison in our arms) – leaving a sunny, white-sanded beach with calm waves – headed towards a deep, dark storm – with no option to turn around.

When I reflect on this day, I often think about what was said during this meeting.  I honestly do not remember any specifics.  I remember being told that your daughter has profound hearing loss.  I remember the audiologist showing us a chart of where most people hear, and Madison’s hearing was nowhere; nonexistent.  I know that we asked a few questions – what were they, well I don’t recall exactly, but I remember that the audiologist answered ‘no’ to all of them.   I recall her saying that many children with hearing loss develop speech equivalent to their hearing peers with things like “hearing aids” and “cochlear implants”. 

I have learned more this past year than I have in the 30 years of my existence.  This journey has taught me more about life than I ever knew.  Because of it, I believe I am a stronger person.  Do I have days where I sit and sulk? I would be lying if I said no.  But each day things DO get better… and it DOES get easier.   Madison continues to amaze me and I am blessed to be the mother of such a smart, loving, beautiful little girl!   Madison is doing very well in therapy and I am confident that she will continue to achieve all milestones that are expected in the coming months.  We have been told that her language (both receptive & expressive) is at that of a “normal” 12 month old child.   Some of Madison’s first words include “Alan”, “Mama”, “Dada”, “Milk”, “More” and “Up”.  She probably understands about 35-40 words by now.  Not bad considering Madison has only been hearing for 5 and a half months! I am so excited with the progress Madison is making and can not wait to see what the rest of the year brings.

Saturday, June 30, 2012

Madison's CHC Fundraiser

September 30th, 2012 - SAVE THE DATE

Immediately following the NYC Walk4Hearing, Brian and I will be holding a fundraiser for Madison.   It will be held at The Junction NYC Bar & Grill to support the Center for Hearing and Communication, a not-for-profit organization that provides life-affirming hearing healthcare to  over 20,000 infants, children and adults annually. The event will be held from 1-3pm and culminates with a grand raffle. 

The Junction NYC Bar & Grill
329 Lexington Ave 
New York, NY 10016
(212) 682-7700

$50 per person, includes a two hour open bar, hors d'oeuvres and the chance to win a door prize.  
We will also be selling individual raffle tickets for a chance to win autographed sports items, children's toys and other prizes.  All proceeds to benefit The Center for Hearing and Communication.

To RSVP for this event, please view our Evite at Madison's CHC Fundraiser.

Please check this blog posting periodically for updates.