The Next Big Step!

 
Can you believe Lily will be going to preschool this next Fall?  Where did the time go?  This is a big step and created a hard decision for our family.  We have been big promoters of Lily being bilingual/bimodal with ASL and spoken English as her two main forms of communication.  This presented a big challenge for us in trying to figure out what the best option might be for our little bug.  So far her language has included sign from ages birth to 12 months and from that point forward has been spoken English with signed support.  She has learned both languages side by side and we want to ensure that this continues for her.  This made the decision making process more complicated than for parents who only wish for their child to use spoken language.

 What do you do in this situation...our choices were an intensive oral school for deaf and hard of hearing children, a community preschool with all hearing children and no other deaf children, the preschool at the school for the deaf, and a developmental preschool in our school district.  The big thing is the IEP meeting and making sure we express our thoughts and concerns for Lily's language acquisition.  It took us a while to wrap our heads around how to go about expressing our concerns and Lily's needs when it comes to the rest of the IEP team.  How do you explain to a team that Lily is doing so great with speech yet ask for a classroom with signed support?  This seemed to be our biggest challenge and may still be.  Lily's hearing ability has not effected her cognitive learning.  She knows her ABC's, numbers from 1-20, colors, and shapes in both ASL and spoken English.  So, obviously this is going to create a challenge in getting what we want for her as far as the type of preschool classroom we want for her.  So here is what we are hoping for her at this point.  We had to go with our hearts and not our heads on this a little.  We want her in a signed support preschool classroom.  We also want to see her spoken English develop on track.  Our plans, if we can convince the team to agree, are for Lily to attend two schools.  The school for the deaf preschool so that she has that signed support to encourage her continued use of asl and the community preschool to support her spoken English.  We plan to do this in two parts.  Lily would attend the school for the deaf in the mornings the first half of her 3 year old year.  The second half she would attend the school for the deaf in the morning and the community preschool in the afternoon.  We are really hoping that our IEP team can agree with our goals for Lily.

With this decision being so hard I can only imagine what it will be like to figure out kindergarten!  The one thing we do know is we want both languages fostered on an even level and will be doing so inside of our home and in Lily's school life as much as possible.  With access to both languages our little Lily will move mountains one day!

What Did You Say?!?

The device that allows bug to hear

In a matter of just a few weeks we have started hearing sentences come out of Lily's mouth.  We often look at her and say "what did you say?'.  We are still in awe when we hear her speak in sentences.  She has also started to put more than one sign together when she signs.  It seems like just yesterday she was startled by the fact that she could suddenly hear.

Some of her most used sentences as of late include "Where it go", "That is Mommy's", "That is Daddy's", "Where ...insert name here", and "This is mine".  She has many more that she uses as well these just happen to be the ones she uses the most.  Her new favorite game on car rides is to ask where mommy, daddy, Leland, and Christian are.  After we answer where we are we ask her where bug is and she responds with "here".

Lily has also developed a great love for playing at the park.  When she sees we are near a park or playground she says "I want to play" while signing play.  She gets along great with other kids and loves to say "hi" to all of the other kids she sees.  She is very shy around adults and we are completely okay with that!

Here are some pictures that show, CI or not, she is like every other kid.  Except when the slide is a bit of a bumpy ride she might lose a processor.

She Will Move Mountains!

Our super hero...She will move mountains in her life!

It has been way too long since I have posted updates about Lily's world.  So let me start with Halloween!  Once again our little bug was dressed as a super hero for Halloween.  This year we chose Batgirl...why?  Because it was so adorable and fit Lily's personality so well!  By the second day she had her costume she was signing bat and then girl and saying Batgirl.  We even got her to sing "nah nah nah nah batgirl".  She wasn't completely in love with wearing the mask that I made her, but she warmed up to it after we finally got it on her.

Excited to go trick or treat!

Lily has started a toddler class here at the Phoenix Day School for the Deaf and this made learning some cool Halloween signs/words really fun!   We learned the signs for pumpkin, bat, vampire, ghost, and spider.  Lily really enjoys the company of the other kids, though she is pretty shy.  She is starting to open up and play more with her classmates and she is starting to interact with her teacher more as well.  It is just amazing to watch Lily pick up so much language!

signing cracker

We love that smile!

Lily's favorite brothers! (They are her only brothers too)

Happy Late Halloween!

Lily visits Zimmerman Speech & Hearing and Kabuki!

Lily's ornery smile...She was ready for a nap!

Lily had her first visit with Cheryl at Zimmerman Speech & Hearing today!  She did very well with Cheryl, especially since Lily is usually pretty shy, and really seemed to like her.  Lily has done speech sessions for the last few weeks and this session was pretty similar, but we did learn some news tips and techniques to use at home.  In this house we love to learn new and useful techniques!  The hardest part of today's session was that Lily was exhausted by the end of it.  It really was a fabulous session and both Lily and I really liked Cheryl!  We are excited to go back next week!

She was asleep within 5 minutes of leaving

Within 5 minutes of leaving her auditory therapy session Lily was asleep in her carseat.  I knew that was coming since she was starting to get ornery at the end of her session.  She is so peaceful when she sleeps!  I was quite amazed that her processors actually stayed on when she fell asleep.  She stayed this way until after we picked her daddy up for lunch.  He had a birthday gift card for his favorite restaurant, Kabuki!  Lily had teriyaki chicken for the first time and LOVED it!  She wasn't quite sure about the chopsticks though.

I think this is how you use these...right mommy?

Okay you try to figure these sticks out

Oh man I can't put them back in their package

By the time we left Lily had given up on her chopsticks and was using them as a drum stick on her seat.  She is such a silly little girl!  We can't wait to see what next weeks adventure to Zimmerman Speech & Hearing and Tempe brings us!

Advanced Bionics Neptune!

The only waterproof swimmable sound processor available!

When Lily was diagnosed at 3 months old with severe to profound deafness we weren't sure if we wanted to get her cochlear implants until she was old enough to decide for herself.  Our decision changed almost overnight after I woke up early in the morning and did a few hours of research.  It took us about a week to fully decide that we were going to go with Advanced Bionics if the option for cochlear implants was offered. Not only did we decide on Advanced Bionics, but we knew we wanted the Neptune.  We live in Phoenix, Arizona and my kids spend a lot of time during the summer swimming.  I know a lot of audiologists say that the ability to hear in the water is not that important at her age, but to us it is important for our daughter to hear in all environments and through as much of her day as possible.

Lily taking her first bath with her Neptunes!

Love seeing the water splash over her head!

You can see they are completely submerged!

Not only is the Neptune waterproof, but it is very fashion friendly!  It comes with many accessories and wearing options.  Because Lily is a baby her processors came with a pink vest (you also have the choice of blue for a boy).  She also received some wearing accessories that are standard choices for older children and adults.  For each processor she received a clip, armband, lanyard, and a pink mini pouch (a full size pouch is also available and they come in 2 other colors as well, blue and graphite).

This is Lily's usual wearing configuration.  This uses the clip and the armband.

The pink toddler vest

Lanyard and pink mini pouch and clip

The pink mini pouch

These are the wearing accessories that Lily received in her Neptune kits.  She received one of each item in each kit so we have back-up spares of some of the items such as the vest and lanyard.  I absolutely love how they have the cute and bright colors for younger children!  Along with the colorful wearing accessories we also got to choose 3 color headpiece covers for the universal headpieces and 3 color covers for the waterproof configuration of the Neptune!  We choose princess pink, ocean blue, and white for Lily's Neptune processors.  She wears princess pink the most because as we know Lily is a C.I. princess!

This our Neptune cover person...Quite a cool idea for a pic!

Mini pouch with Neptune

This is how it fits in the mini pouch

Mini pouch configuration

Lily sporting her Neptunes on the armband with the mini pouch!

Happiest baby girl ever!

She loves her Neptune boxes!  Sporting her blue covers with the armband and clip.

Lily has learned how to climb on her boxes and climb onto the couch.  Here she is sporting her pink and white combined covers with armband and clip.

When people told us that the Neptune box was like a suitcase we thought they were joking.  We knew there were a lot of accessories but we were thinking it would be a bit smaller than what we walked into the audiologist office and saw.  The box for each side is literally like a suitcase with many accessories!

This is what you see when you open the box

This is where the Neptune processor and headpieces are housed in the box

The top section pulls out to reveal the rest of the accessories in the box

Here we have the travel case

As you can see it has a few different sections to store your accessories and items

This smaller case is a daily daily travel case.  We carry it in our diaper bag!

This is the inside of the small travel case

Here you can see both the aqua mic and universal headpieces and the Neptune connect (used to change programs and volume).

There is a slight size difference between the aqua mic (white) and the universal headpiece (pink)

I wanted to share the differences between the aqua mic cord and the universal cord as well.  The aqua mic is shaped a it different and has a little red rubber o-ring for keeping out moisture. (aqua mic is on top and universal is on bottom)

The connect wallet can hold the connect and a few batteries.  It can also be placed on a keyring for easy carrying.

For each side Lily received 8 AAA disposable batteries and 4 AAA rechargeable batteries and a battery charger that came with 2 AA batteries.  Her other charger is pink so her colors were fit for a girl!

This is called a dry and store dryer that helps to get rid of any moisture that is in her implants.  We place them in this at night and it helps to remove any sweat or water that may be in the headpieces or processors.

This is a pretty cool CD!  We have one in each box and it helps the Bionic kiddos to tune up their listening and hearing skills!

These ear buds were included in each box as well to help us hear through Lily's processors and make sure they are functioning correctly.

Finally this is the tool we use to exchange the headpiece covers or change out the magnets in the headpieces if needed.

There is one accessory that is not included in the above pictures due to the fact that Lily is not old enough to use it yet.  It is a pretty neat little accessory that, when she is old enough, will allow her to talk on the phone like, listen to ear buds, and wear regular headphones.  It is called a t-comm and it connects via a small cord to her processor and headpiece.  It contains a microphone that sits right in front of her ear canal and allows her to have access to the above mentioned devices.

When you think about all of that stuff I suppose the box does really need to be as big as a suitcase!  Believe me all of that stuff fits perfectly into the box with just a tad bit of room to spare.  I do love that it is so nicely organized inside of the box and we keep the boxes to store the packaging and extras in until we need them.  Like I said she got one of everything for each processor and she is bilateral.

This is our daily travel configuration as you can see it all fits quite nicely

This is our travel configuration for longer trips.

In the top compartments we keep the batteries and covers

It all fits really nicely into this one bag!

The best part is the bag has two carrying choices, a handle or a strap, for whatever your needs.

The best part for Lily besides the processors that help her hear are the two monkeys that she received!  She loves Buddy and Melody!  She has is even learning to put the processors on them both.  I don't know if she has quite figured out that they are the same thing she has, but she knows that they go on their heads.

Advanced Bionics Melody and Buddy

Lily hanging out with her favorite monkey friends!

Lily checking out Melody's processors!

We thoroughly love the Advanced Bionics Neptune!  It allows our baby girl to hear in the water and on dry land.  We are so glad she can have the best of both worlds!

The Advanced Bionics Neptune makes Lily smile!