Happy Thanksgiving

- by Erika and Kristina

Thanksgiving is approaching and since we count all of you among our blessings and are so thankful for your support, we thought we’d give an update on what’s happening with Amelia these days.  

She is always a very busy little girl!  Monday to Friday she goes to pre-school from 8am to 1pm and has adapted quite well to the daily class routine.  She knows where to put her backpack, her lunchbox and her jacket and where to sit at circle time.  She learns by watching the others and does her best to participate in all the activities.  The children are fairly tolerant of her, but she is learning that she has to take turns and cannot just push anyone around or take what she wants.  This is important for her to know.  

 

Out on the playground she is more comfortable now that she is familiar with the layout and has even joined the “gang” when they ride their little tricycles in a big circle.  She has mastered the curly slide and scares the teachers when she climbs some parts of the play structure.   Her sense of balance and her vision continue to be a concern to all of us, and she does not like to walk anywhere outside without holding someone’s hand.  We make her do it, but she complains all the way!  She receives physical therapy two times a week at school and twice a month through Rady's Children's Hospital.

Three or four times a week all the children have a 20 minute speech therapy session and in Amelia’s case they are still working on learning to identify and respond to the basic “ling” sounds which are aaah,  eee, ooo, shhh, mmm and ssss.   Some days she responds well to them, other days not so much.  The speech therapist uses different objects and games to make learning fun and Amelia likes the interaction.   Being the rascal that she is she often does things “wrong” on purpose, because she thinks it’s funny.   Her own vocalization is still very limited.  She basically makes one sound but uses it in a variety of different ways.   When she is asked to repeat a word she gets the number of syllables right almost every time.  This learning process is going at a very slow pace and we try not to get frustrated.   We often think that she understands a lot more than she lets on, but only Amelia knows for sure!  She also has speech therapy once a week through Rady's Children's Hospital and we work with her at home. 

Working on ling sounds with DJ and Siena

Since she has to be driven to school in the morning and the teacher encourages parent participation we all take turns driving her and then spending a little time in the class room to observe and help out.   We have also taken the big step of letting Amelia ride home on the school bus.  Only two little girls are on this run (strapped into special safety harnesses) and it is only a 15 to 20 minute ride.  The morning run would take about an hour and a half and that is just not acceptable.

Amelia is constantly on the move and wants to be as independent as possible.  We remember Siena saying “I do it byself” and although Amelia can’t say it, she lets us know that she does not need any help!   She knows where everything goes and insists on putting it there.  She wants to dress herself and help with laundry and dishes and making the beds, well she tries!   She also can be very noisy and has learned to squeal with gusto just like her big sister.  Her favorite toys are Siena’s big doll house (which is a great learning tool) and books and puzzles of all types.  She has recently started enjoying watching TV and loves the Signing Times videos. 

    

Amelia and Siena watching Signing Times

She absolutely never stops and we have to watch her carefully, because she knows how to open doors, turn on fans and work the remote control of TV and VCR.    But she also sleeps very well, ten or more hours a night.   Naps are rare, but occasionally she still needs them.  After a day with Amelia, we usually need one too!

We hope this will give you some idea of where we are in Amelia's development.   It’s an exciting time for all of us but it can also be overwhelming.  We feel a lot of pressure to make sure we are doing the right thing and providing Amelia with everything she needs to be successful. We are learning as we go and know will have to make many adjustments along the way.  It is comforting to know we are surrounded by so many people keeping us in their thoughts and prayers.  We are so thankful for all of your love and support!

                                                   Have a very Happy Thanksgiving!

Rock-a-bye -Baby

September 15th, 2012  
Yesterday Oceanside clocked 108 degrees.  It was a record breaker, but not one we ever really wanted to achieve!   Most of us don’t have air conditioners here, because usually we only need them a few days of the year, so you can imagine how miserable we all were.   Thankfully a section of our house is air conditioned and we spend our day in those rooms waiting for the heat to pass.  Yesterday I received a very unexpected blessing that really brightened my day!
Amelia was here with us.   She had just completed her first four day school week and she was enjoying some down-time just playing with  her toys.  She makes a lot of noise these days when she plays, nothing in any way recognizable, but she seems to like it.  We had to go out briefly to go to her physical therapy appointment and she worked hard at climbing stairs and walking on uneven surfaces (which she absolutely hates!).   Amelia does not seem to need a nap anymore, but after lunch we sat together in my rocking chair and I was singing songs to her.  Now you need to remember that songs or music have never been a part of  Amelia’s experience and she only recognizes a few songs from her speech therapy sessions.   Since she does not like to sit still, she was participating with her hands and doing “the wheels on the bus” and the “itsy bitsy spider” as I was singing.  She got quieter and quieter and suddenly I realized I had actually sung her to sleep for the very first time ever!    What a tremendous feeling!   Usually when I rock her she has just had her bath and is not wearing her hearing device, so she can’t hear anything, but this time she actually listened and enjoyed it.  Wow!
Isn’t it amazing how much we take for granted with our “normal” babies?   Singing to them is something we do automatically and without giving it a thought.   For Amelia this is brand-new and another aspect of her changed existence.    I am so thankful!

A dad's perspective

DJ wrote this essay for an on-line class he was taking while we were in Italy.  He managed to express a lot of what we were feeling at the time as well as when Amelia was born and I wanted to share it with all of you (with his permission of course).

Hope for Hearing

DJ Heston

February 2012

            As my wife and I sit waiting for any news from the doctors an uneasy feeling floods my brain.  It has been over four hours since our daughter went in for surgery.  Doctors and nurses come and go at a dizzying pace but no one stops to shed light on Amelia’s progress.  Maybe it’s the language barrier - this is one of the excuses I am using to reassure myself.  Badges are swiped at one door, pin codes punched at another.  It’s cold.  The operating rooms are in the basement of the hospital and it is snowing outside.  She has endured numerous surgeries so far but this one is very different from all of the others.  This one was elective not mandatory.  This was brain surgery with irreversible consequences if something went wrong.  This was our decision.

            My wife’s pregnancy seemed pretty typical considering this was our second child.  This is easy for me to say because I did not have a child growing inside me; although I did eat for two on several occasions.  Since my wife had just turned thirty five she was subjected to a little more prenatal screening than the average mother-to-be.  Every test came back normal.  She called me at work and within forty five minutes after arriving at the hospital, our second daughter was born.

            Disbelief is the only way to describe my emotions.  I remember thinking of ads in the newspaper with charity organizations showing images of children in South America with cleft lips; they were tough to look at.  This was Amelia.  She was born with a cleft lip and palate, eyelid colobomas, large skin tags, and a hole in her heart.  She was rushed by ambulance to Children’s Hospital where she would spend another three weeks.

            The doctors diagnosed her with facio auriculo vertebral spectrum.  This is a broad diagnosis which lumps together multiple disorders into the same conclusion.  While it was comforting to hear her abnormalities identified, it meant little to us.  Certain images of the future became obscured.  Following the birth of our first daughter, at particular moments I could picture myself in my parent’s shoes.  I could see my child going to school, getting married and having children.  All of these notions came to a screeching halt.  Would Amelia ever be normal?  Would she ever be able to lead a normal life?

            The fifth day in the hospital a specialized ophthalmologist performed surgery on Amelia’s left eyelid.  Three months later, she had surgery on her other eyelid and had her cleft lip repaired.  At eleven months old surgeons repaired her cleft palate and reconstructed her left eyelid.  She had a few other surgeries in between to replace tubes in her ears to relieve fluid accumulation.  We had some amazing doctors.  Amelia would not have progressed so far without their expertise in their respective fields.

            Most newborns receive their newborn screening within the first twenty four hours after birth to determine their ability to hear.  Amelia had so many other postpartum complications that she did not receive her hearing test until a few days later.  When she failed it, we were not overly concerned.  It is not uncommon for newborns to fail the newborn screening test.  Then she failed her BAER test.  In the months that followed we came to the stark realization that Amelia was deaf. 

            Deafness is not the end of the world.  American Sign Language or ASL has become more common and is being taught in some schools and colleges.  My wife took a baby sign language class with our first daughter which really helped her communicate before she could actually speak.  Since Amelia was born with special needs, we were enrolled in the early start program and had a sign language instructor come to our house every other week.  ASL has played a valuable role in our family by helping us communicate to Amelia and her to us. 

              While ASL has been a tremendous help we still pondered the possibility of Amelia being able to hear.  Currently, many children who are born deaf receive cochlear implants before the age of two.  A cochlear implant is a device that is implanted under the skin near the ear which stimulates the auditory nerve and produces sound.  Researchers and doctors have stressed the importance of implanting children at a very young age to obtain the best results.

            A cochlear implant seemed like a viable solution until we learned Amelia was missing her auditory nerves.  An MRI of Amelia’s skull confirmed this fact.  A cochlear implant would not work.  Amelia’s audiologist e-mailed us an article about a procedure called an auditory brainstem implant or ABI.  ABI’s are similar to cochlear implants except for the electrode is placed on the brainstem.  It is a very complicated and serious surgery.  More importantly, it is not approved by the FDA for children less than twelve years of age.  After some research we learned of a doctor in Italy, Dr. Colletti, who has successfully implanted children and achieved tremendous results.  We sent him Amelia’s medical records and waited for a response. 

             When we received confirmation from Dr. Colletti that Amelia was indeed a candidate for an ABI and he was willing to perform the procedure we were at a crossroads.  Amelia had recently turned two and had progressed beyond our expectations.  She had started to walk and was using more sign language every day.  Do we risk her future on a procedure that could leave her brain damaged?  While the chances are slim, there is a chance that the wrong area of the brainstem could be touched leading to seizures and brain damage.

            There was also another factor which weighed heavily in our decision: price.  The procedure was about ninety thousand dollars and not covered by insurance.  I had been laid off from my job of over fifteen years and returned to school.  My wife and I are prideful people but there was only one way to give Amelia the opportunity to hear: ask for help. 

            While I was reluctant to share our hardships with everyone, I was also very concerned about coming up short on fundraising.  What if we only raise a few thousand dollars?  What if we raise a tenth of the money?  We will have to come up with the balance.  There is no turning back once we start receiving donations.  We can’t say, “We came up well short of our goal and won’t be able to go ahead with the procedure, but thank you for your contribution.” 

            Overwhelming is the only way to describe the support we received.  My wife’s co-workers held a fundraiser at a park.  An acquaintance had a neighbor who hosted a fundraiser at her restaurant.  A friend of ours obtained sponsors and ran a half-marathon.  My wife’s parents went to church with a family who held an annual walk-a-thon through their non-profit organization.  The organization supported families whose children suffered from illnesses and disorders and they generously accepted Amelia as one of their beneficiaries.  Five months later we have reached our goal.  It is very humbling to have so many people pitch in to help change our daughter’s life.

            We finally see a familiar face appear through the secured double doors. Dr. Colletti must have seen the look of consternation on our face and approaches.  In perfect English with the obligatory Italian accent he asks, “Has anyone talked to you yet?”  When we reply “no” he reveals, “Amelia is okay, they are just finishing up.  The implant looks great, great potential!”  What a relief. 

It has been five weeks since the surgery and here we sit, in fair Verona.  The device gets activated on Monday, the day before we leave.  It is turned on at extremely low levels at the beginning and is finely tuned over months and years.  The decision to proceed with this surgery has been one of the toughest decisions my wife and I have ever made.  Before we embarked on this whole journey our five year old daughter asked, “When Amelia turns four, will she be able to hear me call her name?”  Let’s hope.

Amelia's first day of preschool

Amelia started an auditory preschool program for deaf and hard-of-hearing children today.  She has been wanting to go to school ever since her sister Siena started last week.  She was very excited to get a new backpack last night and help pack her own lunch. 

Amelia will be going to school 4 days a week for 5 hours a day.  We were a little worried it would be too long of a day for her but she was so busy playing when we arrived to pick her up that she barely even noticed us standing there.

I suppose I can take the small bruise to my ego if it means she is enjoying herself :).  Her teacher and the rest of the staff are wonderful and we are looking forward to a great first year at school and all of the accomplishments it will bring.