Saturday, September 24, 2011

Sept 2011 - Fine, You Can Have Three

On Thursday, September 22 we had our meeting with NY State to determine how many sessions of state-funded therapy Madison would receive until the age of 3.  This was our ISFP meeting, Individual Family Service Plan meeting.  Present at the meeting was: Madison, mommy and daddy, Tamara (our service coordinator), two representatives from NY State, and Meredith (director from Clarke) on via conference call.

The ISFP meeting is the third step in the early intervention (EI) process.  The first step was finding a servicer coordinator - we'll be using Tamara (who happens to also work at the Clarke School).  The second step was for Madison to get evaluated by therapists.  We had this done by two therapists at Clarke - Sarah and Lauren.  The EI program is not solely related to hearing loss.  In fact, it covers many other areas.  However, Madison will be using the program for speech therapy and we've aligned ourselves with the Clarke School as their speech therapists focus on infants/children with hearing loss.

At the meeting, we focused on Madison's development as well as our concerns (and goals) for the short-term and future.  We had been forewarned by numerous people that this meeting was tedious and intrusive, but we did not feel that way at all.  Maybe we were lucky with the two state representatives that ran our meeting.  We were hoping to receive three 30 minute therapy sessions a week, along with a parent/infant group therapy transportation to/from the UES. 

Even though they claimed our appointment was one of the first of its kind being performed online using their "NICE" system, it felt as if there was a ton of paperwork.  When we finally go to the section of which services the state will approve Madison for, one of the state administrators said, "We'll give Madison two sessions, 1 group and transportation."  We were shocked!!!  Tamara had said to us that all of her recent families were granted with three sessions.  Immediately, Tamara (politely) objected and Meredith weighed in with her opinions too.  My husband and I said, "We know these next few years are critical and don't want to have any regrets."  Next thing we know, the state representative said, "Fine.  You're approved for three therapy, one group and transportation."  Meeting adjourned.  We'll have meetings with the state every six months until she turns 3 years old, then we switch from the Department of Health to the Department of Education. 

In this difficult time, we are so happy to be living in the greatest city.  To have all of these options available to us, and a short car ride away is invaluable.  Now, it's up to us to utilize these resources and have Madison reach her full potential.

Sept 2011 - Are the Hearing Aids Working?

This is the most common question of the moment... Often asked by others and more often a question bouncing around our own heads on a daily basis. 

Madison won't be going into a sound booth until she is a bit older, so the best way to guage whether or not the HAs are working is based strictly by observation.  Most mornings, when the weather allows for it, Brian, myself, Madison and Alan go on a morning walk. Before receiving her HAs, she would fall asleep shortly after we leave the apartment.  Lately, she has been awake and much more alert in her stroller - hopefully because she is hearing some sounds - sometimes she doesn't fall asleep until we return back to our apartment and go into the elevator. 

There is a lot of construction going on in our neighborhood - which has been helpful to try and test out the HAs.  A couple of weeks ago, I went on a mid-day walk with Madison to run some errands - first stop was the pediatrician's office - she was starting to doze off as we walked inside.  Soon enough a loud screaming baby was brought by us - Madison quickly jerked and woke up.  Did she hear the scream or was it just a coinscidence? Later on that walk, she was sound asleep - we approached a jackhammer (literally 5 feet from us) and she did not budge.  On that same walk, (she was now awake) and we approached another jackhammer - her eyes buldged and it seemed as though it was in responce to the noise.  Earlier today, Brian and myself were on another walk (Yes, we enjoy our walks...I don't know what we are going to do when it starts to snow!) and about to cross the street - when a traffic guard blew his loud whistle 6 times.  Of course, I look immediately at Madison to see if I notice anything different - her eyes buldged just as they did with the jackhammer.

Aside from today's experience, I have shared these findings with Jessica and she says these are all very good signs that Madison is getting some input! Not a single day passes when I'm not constantly thinking about the noise in my surroundings... always wondering what it is like for Madison - if she is hearing anything.  We have been told to keep thinking positive thoughts, that most deaf people receive some benefit from the HAs.  There is a small chance (1%) that she does not have an auditory nerve.  In this case, she would not receive any input from HAs (and with this extreme, she would not be a candidate for a cochlear implant).  Yes, it is so rare, but than again so is our situation.  It is so hard not to keep thinking WHAT IF... We just have to continue taking one day at a time and pray for the best.  We are hoping that the HAs are working, giving Madison exposure to some sounds.  Even though she is not hearing sounds of speech, her nerve and brain are working to make use of the sounds that are being received.  This is priming the nerve/brain for implantation of the cochlear implant.  Madison should be going into the sound booth middle/end of October and hopefully the audiologists will be able to confirm that Madison is responding to sounds with her HAs.

Sept 2011 - Take This With a Grain of Salt

On Wednesday, September 22nd Madison met with an opthamologist - Dr. Levy.  Dr. Levy was recommended to us by Dr. Modi, during her first appointment with the audiologist at Cornell.  The reason for the meeting, is they want to make sure that her other senses (i.e. vision) are okay.

Madison sat in the patient chair (well, on mommy's lap) and Dr. Levy looked at her eyes with all of his tools.  Then, he performed a vision test.  Obviously, no baby can read a chart and repeat letters back to you.  He used pieces of cardboard-like material that were shaped like a rectangle.  One side of the rectangle would have a bar-code/stripe design on it.  He would track whether Madison correctly tracked which side the design was on after he flipped the sheet over and had her quickly glance at it.  The test started out with thick stripes, and slowly increased in difficulty - with the stripes getting smaller and thinner.  Well - she did great!  She has the same vision (if not better than) all of her hearing peers.

Then, we asked Dr. Levy about Usher Syndrome.  For those of you that don't know - a small percentage of deaf infants have a chromosome mutation passed onto them genetically.  In the case of Usher Syndrome, there are 3 main strands - where strand 1 causes blindness by the age of 5, as well as loss of balance.  The other 2 strands also cause blindness and balance issues, but the onset is not until age 10 or later.  (A prerequisite of Usher is deafness at birth).  Dr. Levy's response, "you can take today's results with a grain of salt."  If she has Usher, there would be no way to tell at this age, and unfortunately, the best thing to do is schedule another appointment in a few years.  Dr. Levy believes that 3-6% of deaf infants have Usher.  Hopefully, we will be able to find out if it's Usher during our genetic testing appointment - though Usher is not impacted solely by one (or a few) chromosomes so it's not easy to detect before it's onset. 

It's great to know that our daughter's vision is okay, but upsetting that we still have more questions.

Sept 8, 2011 - 3 months old!

Sept 2011 - Railroad, Hotdog

Madison began speech therapy sessions at The Center for Hearing and
Communications, which is conveniently located about a mile from our
apartment, in early August.  As mentioned earlier, these services are
through the DIP program.  When Madison's services began we had
sessions with the Director, Lois Heymann, until being assigned a
permanent therapist once the school year began.  After Labor Day,
Madison was assigned a speech therapist, Jessica.  Madison's sessions
are 1 hour long and take place every Tuesday and Thursday.  Initially,
Madison was sleeping through most of her sessions.  This gave me an
opportunity to ask questions to Jessica.  What can Madison hear with
her HAs? Since Madison's hearing loss is so severe - she will not hear
sounds of speech when she wears hearing aids.  Sound she may hear
consist mainly of environmental noises: airplanes, baby screaming,
doorbell ringing, whistle blowing, jackhammer to name a few.  What
types of responses should we expect from Madison when she is wearing
her hearing aids? An infant with normal hearing would not be turning
their head to sounds yet... Signs at this stage in development include
things such as eye brows raising, stop sucking a pacifier, startling.
At this age, it is very difficult to detect.  Once Madison is a little
older (4-5 months) she will be put in a sound booth to see if she
reacts to any of these types noises.  How should we interact with our
daughter? One of the most important things is to treat her as a child
with normal hearing.  Sing to her, talk to her, dance with her... do
all of the things you would do as if she had no hearing loss.  They
stressed the importance of constantly engaging Madison.  Any noise she
makes - we repeat back to her.  If we are playing with a toy that
makes a noise (i.e. rattle), once the noise stops... we wait for her
to make a sound, than continue the movement (i.e. shaking).  Madison
has been making so many noises, will they eventually stop? All babies,
regardless of hearing loss go through a routine with "talking".  First
they begin to coo, than they begin to babble, than jargin and
eventually begin speaking real words.  In babies with hearing loss,
they follow the first two steps... but eventually they stop.  That is
because they are getting no feedback to continue (ie hearing someone
talk back to them and have a "conversation").  Because of this, it is
extremely important to react anytime she makes a noise... hoping that
she will not stop making the noises.  The past 5 sessions, Madison has
been awake! She seems to really enjoy therapy and love Jessica! The
session usually begins with Jessica testing out her HAs to make sure
they sound normal.  She connects the mold of the HA to a long tube and
inserts the other end into her hear.  She makes sounds testing their
functionality "Ahhh, Eeee, Oooou, ChhChh, Ssss Ssss, Railroad,
Hotdog".  The vowels/constants and those exact two words include all
of the frequencies in the audiogram for speech sounds!  This usually
takes a few minutes than it is time to play! Madison spends most of
the time giggling, cooing, laughing and enjoying herself.  We have
played with a drum, cow bell, bells, bubbles and building blocks.
Madison's favorite toys seem to be the shiny bells.  Madison will
continue going to therapy twice a month.

Monday, September 5, 2011

September 2011 - Her Latest Trick

Madison absolutely hates tummy time... so she figured out how to get out of it!  Take a peak below at her latest trick!

September 2011 - Little Miss Sunshine

Mommy is making sure that I wear all of my pretty dresses before I grow out of them... Here are a few pictures, more to come...

August 2011 - Dear Madison

Most of you may know that we decided to have a doula assist with the birth of our daughter.  We were so glad to have met such a wonderful women, Rachel Weber - she arrived at our apartment when labor began and was with us in the delivery room up until Madison's arrival.  She eased my mind and helped soothe my pain... and truly made everything such an enjoyable experience.  We just received this letter in the mail from her last week.  Enjoy the read.