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.

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)!

Lily 8 Months Post Activation!

That's our Lily!

On the 12th Lily was officially active for 8 months and my oh my how she has changed!  Not only did she grow more hair and get so much taller, but she speaks and understand so much.  She has always been a talker/babbler and now she talks almost every minute she is awake during a day.  Like a normal toddler if she is quiet you better go see what she is into!

Getting the ball for Leland!

One of the things I love to stress to people who meet her is she is like any other toddler.  A few weekends she even went out and played some catch with her brothers.  The one difference between her and other toddlers is the amount of equipment that can be damaged by a ball while playing catch.  My sons would throw the ball and Lily was suddenly very close to being hit by it.  This wasn't their fault it was more that Lily wanted the ball and as soon as they threw it she was on it!

I want to play catch too!

We sometimes get the comments that it is sad or that people are sorry that Lily is deaf.  We don't get offended by it anymore we just tell them she is like any other kid and with her cochlear implants she can "hear" like any other kid.  She is by far the most courageous kid I have had, not because she has implants, but because she knows no fear other than strangers.

Jumping with Daddy!

 Speaking of strangers...guess who is not so much of a stranger to Lily anymore?!?  Cheryl no longer has stranger qualities in Lily's mind.  We often get to the office early and we play outside until Cheryl arrives.  Starting a few weeks ago Lily now runs to Cheryl when she sees her coming down the sidewalk.  It really is one of the cuter things she does!

Waiting to see Cheryl

Over the last few weeks Lily has learned bath time words and foods!  It took Lily a little bit of time to warm up to the idea of giving the baby a bath, but eventually she got really into the concept.  After all she seems to love anything that has to do with babies.  We learned bath, bathtub, soap, water and many more fun bathtub words.  Lily has known and signed water for a few months now, but it was in the context of drinking.  It is neat to see her pick up on the other contexts of words.  Foods she had no problem with seeing as Cheryl picked so many of Lily's favorite fruits and vegetables to start with.  Lily is a fruit and vegetable fiend!  We have worked on strawberry, banana, orange, carrot, peas, yogurt, and milk!  Oh, we can't forget the eating utensils!  Lily has also picked up bowl, spoon, and cup!  Her speech is coming right along!

In this weeks video not only will you see Lily say a few of the previously mentioned words, but you will see her talk in sentences!  Where did those come from?!?  Cheryl and I were completely amazed!

 

As always we are so excited about Lily's progress and how far she has come in, what seems like, a few short months.  As Lily's daddy often says "She is amazing!"

Merry Christmas and Happy New Year!

As a family we have learned so much this last year when it comes to Lily.  Most people have a baby and think that a typical baby comes with a huge learning curve.  Lily, I must say, came with one of the biggest learning curves I have ever seen in one of my children.  All of my kids posed challenges for me at some point in time just not when they were so young.  Lily was a whole new ballgame and I think we took her challenges exceptionally well!

Oh my how she has grown!

I will admit that one of the biggest challenges we have faced with Lily this year was not the surgery, the therapies, or the adjustment to all the new equipment...it was actually other peoples reactions.  We have learned to take it in stride when people ask what is wrong with our daughter and luckily this doesn't happen often.  Usually we get very polite questions about her processors and then once we explain and answer all the questions we get very supportive and loving comments from others.  We are told regularly how beautiful she is and how she is so lucky to be given the gift of hearing through today's amazing technology.  Let me tell you that as parents we thoroughly appreciate these comments.  We are hoping in 2014 to keep the positive energy going about cochlear implants and of course help to positively educate those who want to know more about them!

 

Many thanks to Cheryl and Carla Lily loves both of these!

Now onto the progress Lily made over the Christmas holiday and New Years!  I was just telling Cheryl how some weeks it seems as if Lily just takes off and picks up like 5 or so words while other weeks she only picks up maybe one.  Well during this holiday season Lily picked up a ton of words.  Not only that but we notice she is starting to "fine tune" words more often.  Water started out at "wa" then went to "wat" then it was "watee" and now after about a week it is "wata".  I don't know how much I can reiterate how amazing it is to watch her grow.  Watching every child grow is amazing and they all have firsts, but with Lily it is just a bit different.  Lily had firsts with all the physical milestones and firsts with ASL and now we are getting all the firsts with speech.  It just seems so amazing because we started with a baby that we didn't think would ever hear us or speak and now we have a beautiful little toddler who understands a good percentage of what we say and can communicate through speech and hearing.  Isn't technology fabulous!

So, thanks to Lily's cochlear implants she was able to get lots of toys that made sounds for Christmas which thoroughly excited her!   I think her favorites were her books that make animal sounds, her cupcake set,  and the Leapfrog Fridge Words.  A close second place was her Little People Princess Castle and violin.  We are super excited about the violin!  One of the reasons we wanted Lily to be able to hear was to be involved in music like her big sister and brothers.  Now she can start learning the violin in a few short years!  The butterfly dream light was one of the best investments ever!  Lily now goes to sleep staring at stars on the ceiling and it seems very soothing to her.

2013 was a great year for our family and Lily and it ended with family, friends, and some fabulous speech therapists!  I hope 2014 is just as exciting if not more and we learn even more than we did this year!

Coming next week: More speech development and a visit to see Jackie Busen at Phoenix Children's!

Little Lily Is 18 Months Old And 6 Months Post Activation!

We can't believe it has been six months since Lily's activation!  Not to mention she is now 18 months old!  In the last 6 months we have watched Lily change in the obvious ways most toddlers change and then we have watched her develop into this little girl who talks non stop most days.  You can not always understand what she is saying, as is the case with most toddlers her age, but she has her ways of getting her point across.  She does use both sign and spoken language on a day to day basis and most of the time the signs come with the spoken word.  I have some video clips we just happened to catch during therapy of Lily signing and speaking the word.

This leads me to Lily's therapy sessions, which are fabulous!  I can not begin to tell you how much we appreciate Cheryl and everything she has taught us!  I was told very early with Lily that most health professionals involved with her would be with us for a very long time.  You have to have a good working relationship with the people that are going to be seeing your child.  I have to admit that I believe we made the best choice in going to Zimmerman Speech & Hearing Center and I believe Cheryl is a perfect fit for us and Lily!  Lily loves Cheryl and gets so excited to see her each week when we get to the office.  Lily is typically a very shy kiddo, but not when Cheryl is around!  It seems that every Tuesday as soon as we go in the door Lily is following Cheryl around wondering about everything she is doing.  It is so totally cute!

Watching signing time...she loves that show!

As far as language development goes I am pretty sure Lily's first full completely understandable word was "apple".  She says a lot of other words but apple is a full and complete word where nothing is left out.  She develops new words in her vocabulary almost weekly.  Sometimes it takes us a little bit to figure out that it is a new word.  Needless to say she has quite the vocabulary these days!

 Lily signing wash hands

We can't wait to see where she is at in 6 months from now.  Tune in next week for some Christmas fun!  I might be a little late with the post due to the holidays, but I will try to keep up!

Lily's Naida CI, A Visit With Cheryl, and Genetics!

This week has been a busy one in just the few short days there have been so far.  On Monday, bright and early, we took Lily to Phoenix Children's Hospital to see Jackie Busen to have her new Naida CI Q70 processors programmed.  It was so nice to see Jackie again and Lily seemed to really enjoy her visit.  We took in Lily's Neptune processors and Jackie downloaded the maps off of those.  She put the current map Lily was on onto the Naida processors as well as some new maps that included clear voice and the new Hi Res Optima!

Playtime with Daddy while  we wait for programming

I must say that we are loving the new Naidas for Lily!  She does so well keeping them on her ears and we use a headband to help keep them in place.  Her battery life with the small 110 battery is amazing with the new Hi Res Optima program.  She is only using about half of her battery in a full day of use.  We were going through AAA batteries in the Neptune in less than 10 hours most days without the Hi Res Optima.  So it is nice to see that the 110 Battery is lasting us much longer than it would without this new programming strategy!

Lily testing out her new ComPilot

As I showed in our unboxing we chose the ComPilot and AB myPilot for Lily's extra accessories with the order of her Naida processors.  Both of these are absolutely amazing and we are so glad that we made this decision!  Lily was using the ComPilot before we even left Phoenix Children's so she could watch signing time on her tablet.  We didn't set up the AB myPilot until later that evening and I found it pretty easy to set up and navigate.  I like that I can chose to change Lily's setting unilaterally or bilaterally and she only has to be close by and can still run around and play.  She really isn't one to be held down to change her programs.

You can see her ComPilot and her signing time video

Tuesday morning brought more excitement, as we are always excited for our visits to see Cheryl for our therapy!  I actually sat down last week and made a list for Cheryl, which of course I forgot to bring, of all the words Lily says and signs.  Luckily I did have a picture that I had posted to instagram of said list which I promptly shared with Cheryl.  Lily seems to be picking up language very quickly these days.  Some days I can't keep up!

Getting ready to go see Cheryl

This therapy session was one of those special ones because daddy got to be there!  Lily just lights up when her daddy is in her sessions.  It gets her really excited to show off her skills!  This is exactly what she did.  I got some video of her showing her daddy how the cat listens and how the little toy guy says "weeee".  She also signs a couple of different times if I am not mistaken.  We are trying to keep Lily talking when she signs to keep both means of communication equal.  She is pretty good at the balance though some words she can not speak yet because they are harder to say so she signs them.

Later in the day we met with a genetics doctor to get some information on the genes that could be causing the hearing impairment in my family.  Currently we are suspecting Waardenburg Type II due to the blue eyes that seem to run with the deafness in my family as well as early greying hair and skin pigmentation.  The doctor gave us a few different resources and routes to go as well as suggestions about getting our older children tested once the gene Lily has been identified.  It will be exciting to actually know what gene has caused the larger number of deaf/hearing impaired individuals in my family!

How can you refuse to give her an apple when she verbally said apple?

How we keep the Naida processor in place and it works amazingly!

Signing time, apple slice, and her new Naidas...could life get any better?!?

Stay tuned next week for more progress on Lily and the overview of her first week with the Naida CI Q70!

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!

Lilybug Says "Hi"!

 

 

It has been a very hectic few weeks in my home and I have barely been able to breathe it seems.  Lily has grown by leaps and bounds right before our very eyes!  It is so amazing watching her grow and watching her speech and understanding develop!  We have had several visits with Miss Cheryl since my last post and unfortunately I kept walking out of the house without my camera and of course I realized as I pulled into the parking lot of Zimmerman Speech & Hearing Center.  What can I say life with Lily and three teens these days is just a bit interesting.

So in our last few sessions with Cheryl Lily has just wowed us with her skills!  I always walk in and tell Cheryl all about Lily's past week and the things we have seen at home which of course she chooses not to always demonstrate for Cheryl.  On the other hand Lily will demonstrate the things I don't even realize she knows which is always amazing.  In the last few weeks Lily's Neptune got some new programming including the Hi-Res Fidelity 120 and we have seen huge leaps in her understanding of speech in the last week and a half that she has used it.  She is clearly responding to her name, waves "hi" when you say hi to her, waves "bye bye" when you say bye bye to her, she is being able to recognize, by sound, all of the toys/objects in her speech box at home, and she also recognized mommy and daddy!  One of the cutest things from this week, which of course I missed on camera, was when Cheryl sang the clap your hands song for Lily and Lily clapped without any hints and she did it with a huge smile and a little giggle!  I am telling you the cuteness just doesn't end with this one!  Daddy got to go this week so I really wanted to get more footage but just wasn't able to with just my phone camera.  I do have some footage taken on my phone that I caught throughout this week that I will share with you all so you can see how far she has come from the beginning.  My mindset has come a long way since making the choice for cochlear implants for Lily.  I was so scared that something would go wrong or she wouldn't hear and it would be all for nothing.  Let me tell you my feelings are no longer of doubt and sadness...cochlear implants are an amazing gift from the technology world to ours!

Lily is waving "Hi" to mommy!

Lily hears mommy say her name and responds!

Stay tuned for more updates next week on Lily's progress and I promise I will pack the camera in the diaper bag the night before this week!

And We're Back!

Our usual sausage breakfast waiting to see Cheryl!

 Last week Miss Cheryl was not feeling well so we did not have therapy, but thankfully she was feeling much better this week!  We are back this week with many exciting developments in Lily's life!  Unfortunately Lily was a bit stubborn when it came to therapy this week, but that could be because she was not ready to be awake that morning.  All in all she did pretty good she was just on her own schedule and wanted to do her own things and not so much some of the stuff we wanted her to do.

We learned a couple of new routines this week which I think Lily is enjoying.  Sadly I forgot the tool for one of them in Cheryl's office.  It was the big "googley" eye!  Lily has been very interested in the baby's eye for a few weeks now so Cheryl had decided maybe it was time to introduce Lily to the word "eye".  Lily seemed to like this one a lot and has been poking me in the eye all week now!  We also introduced her to a new scarf "up, up, up, Down" routine that Lily seemed just kind of so-so about.  Mainly I think it is because she was tired.  She just wasn't her usual animated self this Tuesday.  She did choose to demonstrate for Cheryl her new found sounds of the week which was pretty cool!  She is now saying and mimicking "baba", "mama", and "wawa".  This little girl is on fire I tell you!  She has also gone from walking to nearly running!

 You can tell she is tired when she sits in my lap and isn't all over the place

 This is Lily talking a week ago...

This is Lily saying "baba" on Friday this week!

Tune in later this week for a compilation of Lily's last 8 weeks and some new things she is picking up and her new favorite hobbies!

Daddy Joins Us For Therapy and Lily Uses The T-comm!

Lily modeling her newly active T-comm

This weeks therapy session with Cheryl was super exciting because Lily's daddy got the chance to go and see exactly what happens behind the curtain.  So far Bobby has only been able to see the videos and the amazing after effects of Lily's visits with Zimmerman Speech & Hearing Center.  It was truly amazing to see how very excited Miss Lilybug was to see her daddy doing her therapy exercises with her as well as mommy and Cheryl!

We learned a new routine this week and it was so cute to see Lily pick it up almost instantly.  We learned "shhhhh" where we put the little baby into a little crib and say "shhhhh".  Lily actually put the baby in the crib and started whispering or at least what sounded like whispering.  We were all pretty amazed at how quickly she got that one down.  We are starting to notice that Lily is hitting a very stubborn phase so sometimes it is not so easy to get her to pick up on the routines.  She is much more interested in her own desires lately, but she still seems to be doing phenomenally!

This week just happened to be one of the weeks where Lily had a mapping the day after her speech therapy.  At last weeks therapy session we discussed with Cheryl if we should try out Lily's T-comm devices with her Neptune processors to see if there may be some good benefits for Lily.  We were both in agreement that it would be a good idea so at this weeks mapping Lily got to try out her new T-comm devices!  She did really well adjusting to them, but she does like to pull them off once she notices they are there.  I assume, like her headpieces, she will leave them alone once she acclimates to them.

After her new programs were active and Lily was all set up her audiologist started talking to her and Lily actually responded to her!  Lily usually runs around and does her own thing when not in the sound booth.  We feel this was a pretty big step for Lily to realize she was being spoken to.  We are noticing this more and more as the weeks go by.  Lily responds to her name, the television, and music.  She has a new found affinity for dancing as well and it almost sounds like humming!  She sure is one happy little girl!

Let me share some pictures of how the T-comm setup looks with Lily's Neptune processors.  We absolutely love that there are little flexible holding wires to keep the T-comm on her ears!  It makes it so much easier to keep them on her.

 

You can see Lily's Neptune headpiece connected to the T-comm via the short cable and then the long cable connects the T-comm to the processor.

Now for some just generally adorable pictures of Lily modeling her T-comm and Neptunes!  I really do believe Lily LOVES to hear her world around her.

 This is Lily's semi-ornery smile

 Lily wants mommy's camera

 I don't know what she was looking at, but this is a good view of her setup!

There is my sweet girl!

Stay tuned for more Lilybug adventures next week as we venture to our first therapy session with Lily's T-comms!

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!