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.