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!

Our Little Lily Is Blooming So Fast!

November 12, 2013 officially marked the 5 month mark since Lily was activated and heard for the first time!  We are so very proud of the progress she has made in that short period of time!

Lily sees Cheryl every Tuesday and it seems that she always has some new skill to show off during her sessions.  She recently demonstrated her elephant noise, stay there, up up up, round and round, as well as her ability to give fives and play peek a boo. Lily definitely makes therapy a fun event.  This week she even showed Cheryl how she can throw a mini fit which was actually quite cute!

I wanted to get a video up of the last 7 weeks and all of the videos we have done in that time period.  Unfortunately my computer thought otherwise and decided that it was going to take its final breath.  Luckily we were able to save all of my video and pictures from the hard drive to another computer, but I lost all of my editing I had done on all 10 of the videos from the last 7 weeks.  I will be back to weekly videos from this point forward since I have a more functional computer!

 Lily loves sitting on this bench when we wait to see Cheryl!

Stay tuned next week for Lily's programming of the Naida and more therapy progress!  Lily talks non-stop at home!

Lilybug's Princess Pink Naida CI Q70 Processors Have Arrived!!! (unboxing)

This is the picture from the box lid

We had to wait just a few extra weeks, due to princess pink being a very in demand color, but the wait was well worth it for these beauties.  Lily has her programming appointment in just a few short weeks, November 18th, so we can see what a difference these will make.  We are really excited to see how she likes the new processors seeing as she loves her Neptunes!  So for now I am going to do a kind of unboxing for those of you who haven't seen this new processor yet and all of its components.

First off when we opened the box that the kits shipped in we saw these two bags that Lily loved and had to inspect every square inch of.  She even acted like she was reading the tags to make sure they were her princess pink color that she ordered.

 One kit for each side! (BTW the backpacks are amazing quality)

I unzipped the main compartment to find a box that took me just a few minutes to figure out how to open.  It has a magnetic flap!  This box contained all of the components to the processor and accessories.  It was so nice and organized!  So I began pulling each box out one by one to check and make sure all of the correct parts where in the box and of the correct color as well.  Here is what was included in this box.

The box which had me puzzled for a few seconds...it has a magnetic flap.

This was the view upon opening the box...very organized!

 The first box contained the ComPilot

The second box contained the AB myPilot

These two items were the only things that were different in each box besides the clips...one was right and one was left.

One of Lily's clips in case we want to have her Naida "body worn"

12 inch cable for "body worn"

 3.5 inch cable for behind the ear

 Listening check so that we can hear if Lily's processors are working properly

 Lily's adorable princess pink Naida processor!

 Size small T-mic 2 with install tool and t-mic protectors

110 rechargeable battery

 230 rechargeable battery

Zinc-Air disposable battery pack (this is what we were waiting on for her processors to ship, but well worth the wait!)

We had decided on two sizes of rechargeable batteries and the disposables in case we are traveling and need disposables for lack of being able to charge the rechargeable batteries.  We do have a USB charging outlet in our van so I don'think it will be an issue, but we wanted to make sure it never was.

 We received this powercell charger for her batteries and the plugin with adapters.

 Some p675 CI batteries were included in each kit to go with her zinc air battery packs!

Zephyr dry and store with brick so that we can keep the Naida nice and dry!

This is the small carrying case that is included and is very nice...Everything fits nice and snug and it is well organized which I LOVE!

Last but not least is the handy reference manual where you can learn all about the features of the Naida!

We are so excited for her Naidas to be programmed in just a few short weeks!  We will have a blog post at that time about the size and how they fit on our little toddler as well as the techniques we are going to use to keep them as BTE processors!

Trick or Treat With Our Little Superhero!

Introducing Super Bionic Baby!

This was Lily's first Halloween to go Trick or Treating so we picked the best costume to suit who she is.  First off Lily is and forever will be our hero.  So we choose for her to be Super Baby!  The costume was cute and pink of course.  I made a few tweaks to make it modern and hip for Lily so that she could look as adorable as possible.  In the end Lily came out as one adorable Super Bionic Baby!  Why?  Because her super power is her processors that allow her to hear of course!

Every superhero needs their milk right?

Lily loved spending the night with her brothers and sister and most of all she loved that she got candy!  We have not really given Lily candy up to this point.  I think she had a sucker on Easter last year, but never tons of candy like last night.  She stole a crunch bar from her Halloween tub and bit a hole in the wrapper so she could eat it.  What a little stinker she is!

Lily with her big brothers and sister!A

Last night was also very special because Lily got to meet her Great Aunt Joni who is also deaf.  Lily was a little skittish at first but seemed to warm up to her pretty quickly.  She seemed to love watching Joni sign to her.  She has watched signing time and seen a few people sign to her in real life, but she loved watching Joni sign!  I am hoping that Lily will be able to become proficient enough in sign to maybe one day video chat in sign with Joni.  I feel it is important for them both.  Hopefully Lily will get to know Joni much better over the years as she gets older!

Lily and her Great Aunt Joni!

Video blog post coming soon!

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!