Therapy, Jacob's Ride, and Diamondbacks...OH MY!!!

 

"Are we going to see Cheryl yet mom?"

With all the excitement this week I wasn't sure where I wanted to start, but I figured let's start at the beginning!  We took our weekly trip to Zimmerman Speech & Hearing to see Miss Cheryl and Lily was pretty excited.  Though she was a bit tired since she kept waking up intermittently the night before.  Still Lily seems to love Cheryl and she greeted her with a huge smile when we walked in the door!  It was great to be able to discuss Lily's progress with Cheryl and find out how she is doing from the "guideline" stand point.  It is great to have a therapist that is so helpful in ensuring my understanding of what we are doing and how much it is helping.  The fabulous progress we see helps as well of course!

So this week Lily was a bit on the ornery side and slightly less cooperative, but she still showed off some amazing verbalization and recognition of understanding.  I have made sure to include the best ones in the video this week!  One of the cutest ones I saw this week was when Cheryl did the "wah wah" for the baby and Lily pointed right to the baby and looked at us like "Hello the baby is there".  I know I say this probably every week, but I just can't help but be amazed at the progress these kids can make in such a short amount of time!  I can not say enough how much I appreciate that we have such good therapists working with Lily.  Especially therapists that Lily really LOVES!

So after all of the excitement of seeing Cheryl on Tuesday we added even more excitement on Wednesday!  We took Lily to meet Jacob Landis, at our local BEA gathering, who is currently riding his bicycle to all 30 major league baseball stadiums to raise money for cochlear implants for kids who are in need.  I must say that it was absolutely amazing to meet Jacob and speak to him about his reasons behind this awesome journey!  He is quite an amazing young man!  Lily got her picture taken with Jacob and even got his autograph on her D-backs ticket for the game that followed the gathering.  I hope to hear that Jacob met his goal when his super long bike ride is done and if you are interested in meeting him or helping support his cause you can visit his site at:  http://www.jacobsride.com/.  I love to see people paying it forward!

Jacob Landis, Lily, and her Daddy!

After meeting Jacob we headed over to the Chase stadium to enjoy the game with our family.  Once we were seated we got to see the pregame introduction of Jacob Landis!  Lily was very antsy at first, but seemed to settle down after a bit.  We weren't able to sit for the whole time though because Lily just wasn't having that.  So we took all of the kids up to see Baxter, the D-backs mascot, during the forth inning and they got autographs and pictures with Baxter!  Lily wasn't so sure about Baxter, she kind of looked at him like "what are you?".

Jacob's Ride Introduction

 Christian with Baxter

 Lily and Leland with Baxter

Alex with Baxter

Christian had Baxter autograph his D-backs poster and the other three got their Advanced Bionics hats autographed!  We also got a picture in front of the biggest "piggy" bank I have ever seen!  Leland is 5' 9" and the bank is just a tiny bit shorter than he is.

Big Piggy Bank!

When we finally got back to our seats I caught a pretty silly picture of Christian playing with the little Melody and Buddy monkeys.  He absolutely loves these monkeys and I am sure it helps that he loves monkeys in general.

Christian with Melody and Buddy

Lily loves Melody and Buddy as well and there was much crying from Lily over Christian having them.  As soon as we snapped the picture Lily had Melody in her hands and was happy as can be!  She is a child that knows what she wants and will make sure you know too.

Lily is so happy now that she has Melody!

We ended up leaving the game shortly after the 8th inning started due to Lily not wanting to sit in the hot stadium anymore.  I don't blame her at all when you get so many people close together like that it tends to get a little humid.  All in all she really enjoyed all the festivities of the night and was asleep in her carseat within 5 minutes of us leaving the parking garage!

Lily trying to figure out what all the cheering is about

Stay tuned next week for Lily's next visit to see Cheryl and news about her 3rd mapping and hearing progress!

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!

Watch the Lilybud Blossom!

 

Playtime while we wait to see Cheryl

Lily had a great visit with Cheryl at Zimmerman Speech & Hearing Center yesterday!  She showed off her new skills that even mommy hadn't seen yet.  It is pretty amazing to see the progression kids make once they get cochlear implants.  It is almost like watching a baby learn to speak, but I can honestly say it is also quite a bit different.  It makes me so happy that we made the choice to get cochlear implants for Lily.

Lily absolutely loves going to see Cheryl every week!  I couldn't believe she actually let Cheryl hold her hand and walk her to the lobby yesterday.  Of course, I missed the picture moment!  Lily is a pretty shy little girl who is timid about people, outside of her immediate family, touching her.  So you can see why this is so cool and speaks volumes about Cheryl!  Lily trusts Cheryl enough to let her walk her to the lobby holding hands.  What a special moment!

So now let me see if I can recap the amazing things that Cheryl and I saw yesterday.  Well maybe I will wait and let you discover them in the video I am going to attach to this post.  It is so much more fun to see the end results of weeks of practice isn't it?  I think it is!

So there you have it!  Lily is doing phenomenally!  She loves going to see Cheryl every week and learning all of these new sounds!  We can't wait to see what the future holds for Lily on this hearing journey of hers!

Lily loves this dollhouse so much she wanted to play "in" it!

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!

Another Amazing Visit With Zimmerman Speech & Hearing Center!

Lily waiting to see Cheryl

We had our second visit with Cheryl at Zimmerman Speech & Hearing today!  Lily responded very well and learned about some new sounds.  She learned "bang" with the hammer, "knock" by knocking on an object, and "up up up down" with the froggy!  She responded several times during our ling sound listening exercises which was pretty exciting to see.  She even dropped a lid into the container after hearing a sound.  Lily also shared her babbling skills with Cheryl during the session!

Lily doing "round and round" with Cheryl

It is really exciting to watch Lily pick up these new skills at this stage.  I know for most parents it is exciting, but since Lily couldn't hear for the first 12 months of her life it is super exciting to see her hear, speak, and acknowledge sound for the first time!  It is pretty amazing!  Then again Lily is pretty amazing (I know I am biased)!

Lily was so excited to play with the big dollhouse today!

Look at that smile!

After Lily did so well in her session today she got some play time!  She had been waiting so patiently to play with the big dollhouse.  So we unleashed the Lilybug and she couldn't have been happier.

We look forward to many more fantastic sessions at Zimmerman Speech & Hearing Center in the future!  Hopefully next week we can get some more video of Lily's fantastic new skills!

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!