Off To Ballet And Where did Those Words Come From?!?

Our little bug started ballet last week and we are just so proud of her!  She is a bit skittish with the teacher, as she usually is with strangers, but she absolutely loves the interaction with all the other children her age.  This week was her second class and watching her in class with her biggest brother just melts my heart!  It just makes me think about what a great young man I have!

 

My baby boy and my baby girl!

This week was our first interaction about her cochlear implants in class.  It was kind of interesting because there were two older ladies sitting next to me watching their grand daughter and talking amongst themselves.  I happened to hear one of them say "Oh look, that little girl has hearing aids, that is interesting".  I didn't say anything just kept watching Lily in class with Leland and each time she would see me she would look and I would wave.  Eventually the lady's said "Is she your little girl, she is beautiful!  Are those hearing aids she has?" to which I proudly replied "Those are cochlear implants".  they were very pleasant and had even know a girl in their neighborhood who had cochlear implants like 10 years ago.  They were very interested in how she was doing with them and the technology behind them.  It turned out to be a great conversation and I love to show the world how awesome cochlear implants can be!

Laying Cinderella down for a nap...It is tiring being a princess!

So this week Lily has not ceased to amaze me!  Most of our day is in some form of conversation.  Even if not every word is understandable she carries on a pretty good conversation.  Another thing she picked up on this week is her brothers names!  I will be honest I didn't teach these to her...her big brother Christian did and when she says his name it sounds a bit like kitchen, but he'll take it!  It is amazing how two teenage boys just turn to jello with their baby sister.

Running with new friends from ballet class!

I didn't get much video footage from speech this week since my camera battery mistakenly wasn't charged the night before...so I will share some footage of Lily listening at the beginning of speech and a small clip of her in her ballet class (if you listen closely in the beginning you hear her call for her daddy)!

We Are Back Once Again!

Lily sitting on Bobby's lap signing "Daddy" the day of activation!

This last month or so has made it a bit difficult to keep up with Lily's updates.  We have a total of 4 kids and life outside of Lily can get hectic!  I will not be posting an updated video in this blog post, but I promise to post an updated video that encompasses the last 7 weeks in the next blog post.  I hope to have that up by next Wednesday!

 Lily loves posing while we wait to see Cheryl!

Now on to the best part, Lily's progress!  Lily has now been active for four and a half months and is doing phenomenally!  She is picking up speech sounds at a 20 decibel hearing level.  At this point Lily has a really good foundation it seems with both receptive and expressive language skills. We absolutely attribute this to Miss Cheryl Klein at Zimmerman Speech and Hearing!  We have learned so much from her about how parents really play an important role in language development for kids with hearing loss. Auditory-verbal therapy does not stop the minute you walk out of the therapists office, it continues every waking minute of the child's day.  I know it sounds like a lot of work, but to be honest it is a lot of fun and some of the best one on one time you can spend with your child!  I feel like Cheryl has taught us how to turn regular everyday activities, that we would do with Lily anyway, into a speech learning experience.  Many people have seen us in stores lately dancing in the aisles with Lily because that was a recent word we were learning with Cheryl and Lily LOVES to dance!  We do everything with a little bit of flare and style when it comes to Lily and you know some people stare, but we don't mind as long as Lily is learning something new!  So a big THANK YOU and round of applause to Cheryl for showing how therapy is really done!

On other language fronts, not only is Lily really picking up on verbal language, but she is picking up sign language pretty quickly now too.  She is signing mommy, daddy, more, eat, milk, shoes, wash, all done, and clothes!  She loves watching her signing time videos and seems to pick it up pretty quickly.  I am amazed how it seems that each day she picks up a new sign and some new vocalizations as well!

 

 Isn't she the best Advanced Bionics model ever?  Alright the cutest!?!

I know many have heard about the new Advanced Bionics processor, the Naida Q70 CI.  Lily should be receiving both of hers, in princess pink of course, here in the next few weeks!  We are super excited to be able to use the new technology that is available!   We are hoping to see Lily soar even higher with the use of this new processor!

Lily can't wait to get her new Naidas!

For those of you who read my blog if you would like to comment I would really appreciate it!  I was contemplating starting a YouTube vlog as well to document some of the day to day things we see with Lily.  I feel like we see things day to day that just don't show up in her therapy progress videos.  What do you think?

Stay tuned for a new video next week!

Lily Shows Off Her New Skills!

 

Miss Lilybug had a very busy week this week.  On Tuesday we visited Cheryl at Zimmerman Speech & Hearing Center and on Thursday we got a visit from Cati, Lily's parent adviser from AZDB!

Lily, as always, thoroughly enjoyed her visit with Cheryl and we learned some more new routines that we can do at home.  Lily's favorite seemed to be the clapping song.  As you will see in the video from this week Lily even signed "more" so that we would sing the song again.  She also wowed Cheryl with her fabulous imitation of "fllllyyyy"!  Lily is picking up much more than we thought she would at this point in her journey.  She has become such a little vocalizer and listener!

On Thursday it took Lily a few minutes to warm up to Cati again, but once she did she really showed off some of her new skills.  Lily even allowed Cati to do some of her speech therapy routines with her.  Lily really shined when she showed Cati how to make the baby listen to her vocalizations!  I think Lily's favorite thing with Cati was the bubbles.  Lily used to be so afraid of bubbles, but now that they have been introduced into her therapy routine she doesn't seem to mind them so much.  It is great to really see her come out of her shell!

 

This week at home we have started to notice Lily really picking up the sounds we all make.  Her two favorites to mimic are kisses and blowing raspberries.  You can be anywhere in the room with her and make either of those two noises and within a few seconds she will start mimicking them.  A new one we have heard this week from her is "ahhhhh".  We discovered this one during her mid afternoon yogurt snack.  I happened to say "Lily say ahhhh" and she in turn said "ahhhhh" and got her bite of yogurt!  We are looking at this little girl that we thought would never hear our voices and seeing a girl who is so obviously hearing our voices every day now!

Stay tuned for more exciting developments next week!  Lily will be attending the BEA gathering where Jacob Landis will be and then attending her first baseball game right afterwards!

Exciting Second Mapping for Our Blossoming Lilybud!

Lily had her second post activation mapping on July 3, 2013!  This one was pretty exciting because Lily got 3 brand new programs.  It was also a little sad because the new programs startled Lily just like when she was initially stimulated.  However, Lily dealt with it like a trooper!  She only cried for a few minutes and then she was being her happy self again and playing with her big brother Leland.

Lily had her sound booth testing done again and did phenomenal!  She was responding to spoken words and tones below 35 dB.  The only problem we had was that the tones scared her and she wouldn't look towards them.  We knew she heard them because her cute little brow furrowed every time she heard one.  Her audiologist, Lisa, said she is fairly certain Lily is hearing much better than she did in her testing on June 19th, 35 to 45 dB range, but she was just so scared of the noises that she wasn't physically looking for them.  She was pretty much suctioned to me and wasn't going to let go!

It has been a whole new experience for us the last few days watching Lily respond every time we make a noise.  She now looks at us when we call her name, she is starting to mimic sounds we make, and she is babbling so much more!  We can definitely see a difference in just the few short weeks since her initial stimulation.  Our little Lilybug is turning into a beautiful blossoming Lily-bud!

We can not wait to see what next weeks visit with Cheryl at Zimmerman Speech & Hearing will bring!  I bet Lily will blow Cheryl's mind with her skills she is picking up everyday!

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!