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!

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!