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.



3rd mapping at House Ear Institute

Here are a few pictures and videos from Amelia's third mapping.  It is very exciting to watch her become more and more aware of all the sounds around her.  We are working on trying to get her to recognize more speech sounds.  Every night DJ and I play the "listening game" with her to check her response to the Ling-6 sounds.  These sounds represent speech sounds from low to high pitch and help us as well as her audiologists gain a better understanding of the quality of the sounds she hears.  The sounds are "ah", "ee", "s", "sh", "oo" and "m".  We had been able to get consistent responses to all of these sounds expect "oo" and "m" so at this mapping session, the audiologists are trying to adjust the programming on her ABI to see if we can get better responses.  This was a few weeks ago and with the changes, we are now getting a few responses to those sounds but still not as consistently as the other ones.

In this next video, Amelia's ABI is connected to the computer and each electrode is being tested separately.  A sound plays through the device and when she hears it she responds by looking at the video monitor and placing a puzzle piece in the puzzle.

Ok, I'm having trouble uploading the video so I will try to update this post tomorrow......

When Cochlear Implants are Not an Option

 Please click on the link below to see an article from House Ear Institute about Amelia.


When Cochlear Implants are Not an Option

Guess who's 3 today!

I can't believe Amelia is 3 years old today!  We have been having fun celebrating her birthday.  We started on Sunday afternoon with a party with friends and family.

Yesterday we went to SeaWorld.........

 And now we are off to the Del Mar Fair.  Do we know how to celebrate a birthday or what?!

Father's Day Fun

Sunday we had fun celebrating Father's Day and thanking DJ for being the amazing dad/husband he is. 

After breakfast, Siena and Amelia gave DJ the cute cards they made for him at school.

 

Then we drove to South Carlsbad State Beach to check if they were any last minute beach sites available for Sunday night.  Luckily, there was a campsite available so we rushed home and packed up our stuff as quick as possible and headed back to set up camp.

 Then spent the rest of the day relaxing, playing,

and enjoying the beach (even if it was a little chilly and overcast).

 

 

 

No camping trip is complete without s'mores.

Happy Father's Day!

We love you!!

 

More noise!

Tom and I were away for two weeks vacationing in sunny Aruba and had a wonderful time. We came back tanned and rested, or so I thought until two days after we returned and I came down with some sort of bug (cold/flu etc.) that kept me in bed for days. Okay, enough whining from me! I know what you really want to know......

Kristina and DJ took Amelia to her second mapping appointment at the House Ear Institute on May 30 and it went very well. Using clever tests and games they were able to get a response from all 12 electrodes this time which is great news. (At the last visit it was only 5.) She also has a new coil on the back of her head and this one is pink. It goes with the pink battery pack behind her ear which is a bit smaller than the old one since it only holds two batteries instead of the previous three. This one fits better and does not put as much strain on her ear. Also her hair is growing in again and will probably soon hide more of the appliances. At the moment it’s a very cute little pixie hair do and most of it stands up on end. It’s all about style, isn’t it?

Amelia appears to be hearing more things all time and is becoming more aware of her surroundings. She’s also much noisier! While before she would often play very quietly and we constantly had to go looking for her, she now makes lots of “baby sounds” while she plays. Sometimes they are soft sounds, but often very loud too. She seems to be experimenting with patterns and noise levels. Just as she used to sign to herself when she looked at her books, she now makes sounds at the same time. We just love hearing her “chatter” like that.

 The HOPE speech therapy is still going on twice a week and those dedicated and clever ladies have managed to extend her coverage through the end of the summer. Amelia loves to see them come and is eager to play the games they use to coax sounds out of her. She’s able to produce a fairly good “mmm” now and learning to differentiate between “ooo’s” and “aaa’s” and “eee’s”. She’s not consistent with this yet and she tries to cheat when she has to repeat the same sound too often. She just gets louder and higher as if to say, “There - take that!”.

Amelia does well with patterns of sounds. “Quack, quack, quack” becomes “ah, ah, ah” and “beep, beep” sounds like “eh, eh”. She enjoys it when we sing little songs like Old Mac Donald and the Wheels on the Bus to her, even though we have no idea how much she actually understands. And she has developed a new interest in the toys that produce sounds. She’ll push those buttons over and over until we want to run screaming from the room. The other day I saw her “counting” her ten stacking cups. She touched each one in turn and made a little sound with each touch. Thrilling!

We are all trying very hard to use more words and less sign language in order to force her to focus on hearing, but it’s not easy, just like breaking any other habit. We also want so much for her (and all of us) to continue growing and developing in ASL.  We were told to orally “narrate her life” as we go through every day activities. “Time to wash your hands. Wash, wash, wash. Come and sit in your chair. Up you go! Up, up, up. Now take a bite. Would you like an apple? Here’s your apple. It’s a yummy apple. Take another bite. Now drink your milk. Mmmm, milk. Milk is good.” And so on and so on. It’s exhausting, but if it’s best for Amelia, we can do it!

Mother's Day weekend

I took Friday off of work so I could attend a Mother's Day Tea (juice and muffins actually) at Siena's kindergarten class.  It was so much fun watching the kids sing and dance and they made all of us beautiful placemats.  Her teacher said she learned lots of interesting "facts" about all of us ladies.....haha....I'm sure she did :).

I was home in time to hang out with Amelia while she finished breakfast and I recorded this amazing video of her "talking".   This is the best response to speech sounds that we have seen yet :)

 I'm sorry it is so short but I ran out of space on my camera card.  She repeated these sounds throughout the day.  We changed her ABI to a new program on Sat and she has done it once or twice since then.


Then I took Amelia to her physical therapy session.  My mom usually takes her so it was great to get the chance to see her in action.  Amelia has a new therapist and I was very impressed with her.  As usual, Amelia was very excited to participate in all of the different activities.

Amelia and I picked Siena up from school and we headed to Golden Spoon for some frozen yogurt.

Today, DJ made crepes for breakfast and they were delicious :).  Then we delivered cookies to our two awesome moms/grandmas, visited with some friends, and took a walk on the beach.  It was a beautiful day and I enjoyed spending it with my family.

Happy Mother's Day!

Amelia's in the mix

Amelia is a busy body!  She wants needs to be involved in everything.  I can't tell you how many times she has smashed our toes with her step stool while following us around the kitchen trying to "help" with cooking, washing dishes, loading the dishwasher, ... everything!  Naturally, she especially wants to do everything Siena does. Siena is such an awesome big sister.  She is very patient with Amelia and really wants her to be able to hear and talk.  Luckily she is a great role model since she talks non-stop all day long :).  She teaches Amelia many new things everyday without even realizing it.

I'm sure it must be difficult for Siena to have a little sister that gets so much attention.  Everyone is always asking about Amelia and we are always either taking Amelia to doctor/therapy appointments or having therapists come her to work with her.  This isn't to say that Siena doesn't get plenty of attention from us and her doting grandparents but I'm sure it can be tough.  She does get jealous at times but for the most part she takes it all in stride.  It is her "normal" and jealously between siblings happens in all families, special needs or not.

This weekend we made up a new game for Amelia that Siena called musical hide and seek.  Siena and I would take turns hiding and would play an instrument (usually a drum or tamborine) while Amelia looked for us.  Amelia was really good at this game and was definitely locating where the sounds were coming from.   We had lots of fun and I'm sure we will be playing musical hide and seek again soon.

Being a busy body has really helped with Amelia's therapy appointments.  She is usually raring to go and can't wait to play with the new toys the therapists bring.  She loves solving problems and puzzles.  We went for her first mapping (sound adjustment) at House Ear Institute in LA on April 18th and she did great.  It was a very long day (10:30 to 4:30 with an hour break for lunch) and she played and stayed engaged for the entire session.  Finally, around 4 pm, she had enough and let us know she was over it.  I think she fell asleep before we even got out of the parking garage!

Amelia is still responding consistently to loud sounds (clapping, loud kissing sounds, banging plates and silverware,....) and some softer sounds like keys jingling.   She seems to be noticing new sounds daily.  Today, for the first time, she responded to Hannah, our dog, barking at the door as well as the door bell.  She does not seem to respond to voices yet except inconsistent responses to shhhh sounds.  Her brain is still learning to listen.  The last two days she has been incredibly vocal and repeats uhh, uhh, uhh over and over again so we are wondering if maybe she is beginning to hear her own voice and playing with controlling it.  Every day is a new and exciting day in the Heston household :)  Never a dull moment........

How do you spell P-A-T-I-E-N-C-E?
Now that Amelia is back from Italy and has her ABI, we all just want to get on with it and see lots of improvement every day. So many people have asked me: Can she hear now? Can she talk yet? But that’s just not how it works! The process of learning to hear is very, very gradual and we have to be patient and allow Amelia to adjust to sounds at her own pace and in her own way.
And wanting to do things her own way is just what Amelia is all about at the moment. She is a two-year-old after all! The phrase, “she wants what she wants when she wants it, and she wants what she wants right now” could have been written just for her. And she lets us know exactly what “Amelia wants“. If Siena has it, “Amelia wants” it too. If there is something on my plate that looks different than what’s on her plate, “Amelia needs’ it. If you are wearing a necklace or a watch, “where’s Amelia’s?“ If she sees a book she would like to read, she points and signs “Amelia read book“ until we do it. If she feels like playing with a certain toy, she signs and prods us until we figure it out. If her toys are not set up the way she likes them, she rearranges them her way. If she decides that she does not want to do something, she lets us know that also. Her little hands are always busy and she’s signing all the time. And when we can’t read her signs a little fussing and whimpering usually gets the desired results. That is not to say that we have a little tyrant on our hands, because Amelia is usually a happy little girl and fun to be around. But she knows her own mind and makes sure we do too!
So what’s different since the operation? Well, Amelia can’t tell us what she is hearing, but we are very sure that her world is changing. She wants her ABI attached the minute she wakes up in the morning and again as soon as she gets up from her nap, which tells us that she is eager to experience whatever it has to offer. We see her playing with toys that make noise in a different way now. She has always enjoyed pushing buttons, but now she pushes them over and over with purpose. She wields the little wooden mallet on her peg-bench with much more enthusiasm, and when she claps her hands she now does it harder so that it produces a noise. She has no idea what any sounds mean or even where they come from, but little by little she will start to isolate noises and learn their meaning. She doesn’t seem to tune in to our voices yet (we are told that will take the longest), but she can tell when we make kissing noises! She recently learned to pucker up for a kiss, so we practice that a lot. She also loves to tap her spoon or fork on various dishes and glasses and it has become a game at every meal time. A few days ago she became interested in a squeaky dog toy and her plastic bucket full of Legos is now much more fun to shake and shake and shake. So there are many little signs of progress and we’re thrilled with each one of them.
And she hit one more milestone a few days ago. She jumped for the first time . . . both feet an inch off the ground at the same time, so exciting! This may not be a big deal for other kids her age, but without a balance nerve it’s an achievement.
Last week DJ took Amelia to the eye doctor and even though she has been there before and not gotten hurt in any way, she started whimpering while they were still in the elevator and kept it up during the whole examination. Obviously she has not forgotten her hospital experience, and we are concerned about her visit to the House Ear Institute next week. A representative from MedEl Europe will be flying to LA for this initial mapping of her ABI and to go over the programming with our audiologist there.
If Amelia cries the whole time it will make this process much more difficult. So, once again we are asking your prayers for Amelia to be calm and content while this important work is being done.

A quick update and some pictures

Amelia's ABI

She's very excited that her doll has an ABI too :)

We are very pleased to report that Amelia is doing very well with her ABI.  When she wakes up in the morning she points at her ear to let us know to put it on.   She wants it off before her nap but asks for it immediately after she wakes up.  She is responding consistently to loud sounds, esp clapping and tapping utensils on plates.   We weren't expecting her to have any response to sounds for at least a month so we couldn't be happier with her results so far.  We have her first appointment for mapping (sound adjustment) at House Ear Clinic on April 18th.  A representative from MedEl Europe will be flying to LA for her initial map to go over the programming with our audiologist there.

We are busy trying to get back to our "normal" routine which means I have less time to do updates but I will do my best since I know so many people care about Amelia and are anxious to hear how she is doing :).  

Video from morning after ABI was activated

For those of you who are not on facebook, this is a video of Amelia the morning after her implant was activated.  What a difference from the day before!!

They're home (March 15th)
Tom picked up some very weary travelers at the airport late last night and we feel like we can breathe a little easier now that they are safely back home. Kristina said that Amelia was extremely anxious going through the airports and security screening and whimpered the whole time, but once she was settled in the airplane she did great during both long flights. Maybe she thought that the airport was still another hospital where she was going to get hurt in some way. Amelia has always been so completely trusting and accepting of everyone around her and we hate to see that this ordeal seems to have broken that trust. However, she is very young and I'm sure this experience will fade in her memory.
I just returned from a quick visit to the Heston home to return some of Siena's clothing and they were busy unpacking and trying to get get their house back in order. They are planning to pick up Siena from school today and I know she will so excited to see them.
Amelia was still in her pj's and was wearing her new hearing device. It looks like a button that is attached to the back of her head (on the right side) with a little wire leading to a small device which is clipped to her collar. She seems to have accepted this new addition to her person and does not seem to mind it at all. Her hair is growing in again and she looks like a little boy with his summer buzz cut. The scar behind her ear looks huge but seems to be healing nicely. She was happy to see me and she picked up right where she left off six weeks ago, hanging up my keys and making sure all the buttons on my sweater were fastened. :)
These past six months have been such a whirlwind of activity for all of us, that we hardly know what to do at the moment. We are thankful, awed, relieved and more than a little tired. I guess we'll have to allow some time for settling down and then tackle the next chapter in Amelia's life which this learning to interpret and process sound.
Stay tuned and please keep on praying. God is listening!

Activation Day

Phew....what a day! We are all exhausted so I'm going to make this quick.

 Amelia on the way to the hospital this morning....

so cute!!

 

We arrived at the hospital at 7:45 this morning. All 4 families were told to come at the same time (as usual) so Amelia was second in line to get her ABR (or BAER - auditory brainstem response). It is a test performed under sedation where electrodes are placed around her head to measure brain waves in response to various sounds. The test took about 1 hour and Dr Carner told us that she was responding to low levels of sound which makes him very happy because it means she has lots of potential. If it makes him happy, it makes us happy too since he knows what all of that means :). It was almost 1130 by then and he told us to return at 2:30 for her activation.

After a quick lunch at our apartment we tried to relax a little bit before returning to the hospital (didn't really work).   Amelia didn't get a nap which is never a good thing.  She also is getting worse and worse about going to the hospital.  All we have to do is cross the street on the way to the hospital (and away from the park) and she starts crying and tugging to go in the opposite direction.  Activation took about 45 minutes.  There were 2 audiologists in the room as well as a representative from MedEl.  Everyone was incredibly nice and there were many toys in the room to try to keep Amelia entertained.

Her device was hooked up to the computer and they went through the electrodes one by one according to her response in the ABR.  Amelia cried the entire time!  She responded very obviously when the electrodes were activated but usually that just meant crying even louder.   She could hear for the first time!!  It was a crazy mix of emotions for me as I was excited to see her respond but at the same time my heart was breaking while she was crying.  The audiologists payed close attention to Amelia's responses and would turn the volume up and down as necessary.  The device has 12 electrodes and 9 of them were activated (all 12 of them were tested and then the last 3 were turned off).

 We took the device off and another MedEl representative went over all of the details of the device (batteries, charging, tiny pins that hold the device together... lots of little details).  It took ~1/2 hr and Amelia cried during that as well (did I mention that she doesn't like the hospital - poor thing - too many shots, IVs and bandage changes).

I can't even imagine how different and scary all of this must have been for her.  Her world is changing! We waited to put her device on again until later at our apartment when dinner was almost over.  We were hoping some dessert might distract her.  She was scared and did not want to wear it at first but she was much calmer than in the hospital.  We left it on for about 20 minutes.  We turned it off but left it on her head and we could immediately tell she noticed a change.  She was very still for a few moments and seemed to be processing her newly acquired sense.  We know she has an insatiable curiosity about the world around her so we are hopeful that leads to an eagerness to learn about sounds as well.

So much for making this quick......... My mind is very full and I have a lot to process so I will leave it at this for now.

Thanks to all of you for supporting us on this journey!