The Next Big Step!

 
Can you believe Lily will be going to preschool this next Fall?  Where did the time go?  This is a big step and created a hard decision for our family.  We have been big promoters of Lily being bilingual/bimodal with ASL and spoken English as her two main forms of communication.  This presented a big challenge for us in trying to figure out what the best option might be for our little bug.  So far her language has included sign from ages birth to 12 months and from that point forward has been spoken English with signed support.  She has learned both languages side by side and we want to ensure that this continues for her.  This made the decision making process more complicated than for parents who only wish for their child to use spoken language.

 What do you do in this situation...our choices were an intensive oral school for deaf and hard of hearing children, a community preschool with all hearing children and no other deaf children, the preschool at the school for the deaf, and a developmental preschool in our school district.  The big thing is the IEP meeting and making sure we express our thoughts and concerns for Lily's language acquisition.  It took us a while to wrap our heads around how to go about expressing our concerns and Lily's needs when it comes to the rest of the IEP team.  How do you explain to a team that Lily is doing so great with speech yet ask for a classroom with signed support?  This seemed to be our biggest challenge and may still be.  Lily's hearing ability has not effected her cognitive learning.  She knows her ABC's, numbers from 1-20, colors, and shapes in both ASL and spoken English.  So, obviously this is going to create a challenge in getting what we want for her as far as the type of preschool classroom we want for her.  So here is what we are hoping for her at this point.  We had to go with our hearts and not our heads on this a little.  We want her in a signed support preschool classroom.  We also want to see her spoken English develop on track.  Our plans, if we can convince the team to agree, are for Lily to attend two schools.  The school for the deaf preschool so that she has that signed support to encourage her continued use of asl and the community preschool to support her spoken English.  We plan to do this in two parts.  Lily would attend the school for the deaf in the mornings the first half of her 3 year old year.  The second half she would attend the school for the deaf in the morning and the community preschool in the afternoon.  We are really hoping that our IEP team can agree with our goals for Lily.

With this decision being so hard I can only imagine what it will be like to figure out kindergarten!  The one thing we do know is we want both languages fostered on an even level and will be doing so inside of our home and in Lily's school life as much as possible.  With access to both languages our little Lily will move mountains one day!

She Will Move Mountains!

Our super hero...She will move mountains in her life!

It has been way too long since I have posted updates about Lily's world.  So let me start with Halloween!  Once again our little bug was dressed as a super hero for Halloween.  This year we chose Batgirl...why?  Because it was so adorable and fit Lily's personality so well!  By the second day she had her costume she was signing bat and then girl and saying Batgirl.  We even got her to sing "nah nah nah nah batgirl".  She wasn't completely in love with wearing the mask that I made her, but she warmed up to it after we finally got it on her.

Excited to go trick or treat!

Lily has started a toddler class here at the Phoenix Day School for the Deaf and this made learning some cool Halloween signs/words really fun!   We learned the signs for pumpkin, bat, vampire, ghost, and spider.  Lily really enjoys the company of the other kids, though she is pretty shy.  She is starting to open up and play more with her classmates and she is starting to interact with her teacher more as well.  It is just amazing to watch Lily pick up so much language!

signing cracker

We love that smile!

Lily's favorite brothers! (They are her only brothers too)

Happy Late Halloween!

Bug Turned 2 And Had Her First Road Trip!

Lily's amazing 2nd birthday cake!

It seems like such a long time since my last post and I have so many things to share that I will probably be making more than one post.  First off, our Lilybug turned 2!  This was of course a very bittersweet moment for me.  I have 4 kids who all got another year older in May and Lily's cochlear implant surgery was a week after her first birthday, on May 30th.  So the month of May in general is a very emotional month for this mama!

Goodbye Arizona

We left Arizona 3 days before Lily's birthday to go visit family, many had never met Lily, in Indiana.  One of the first things we did was go to Walmart and order the cutest cupcake cake ever for bugs special day.  The cake just seemed to fit her perfectly.  The day of her birthday we went out to lunch with some family and friends and Lily got to experience her first crepe as her birthday desert from the restaurant. Later we picked up her cake from the store and she had the most amazing expression at the sight of her cake.  She really just wanted to eat a cupcake, but I can pretend she was as overjoyed with her adorable cake as I was, right? 

Lily's very first crepe!

 We had a baseball game to attend for my nephew the night of Lily's birthday so we chose to have the cupcakes at the game so the whole family could celebrate together.  Also I am one of those moms who doesn't like the mess of cupcakes so outside worked out great!  It was nice and warm too so I just took off Lily's shirt to keep it clean as she shoved her cupcake in her mouth and covered her face with icing.  All I had to clean up in the end was her face!

Bite one of her cake!

Lilybug approved!

 Sadly our week and a half in Indiana went by way too fast!  It was really hard to leave our family there, but Bobby and I were so ready to be back in our own bed.  Lily enjoyed the ride home a little bit more than the ride there, but we stopped quite a bit more on the way home to let her run and play.  I think Lily will be much more excited about road trips as she gets older and her communication skills develop!

She learned how to walk barefoot in grass!

Lily ready for bed night 1.

Now for your viewing pleasure some pictures of Lily and Summer, they were due the same day and Summer was born at 28 weeks.  They had just met for the first time on this road trip and are cousins!  They are just too cute!

Stay tuned for more happenings from our last couple of months!

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!

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!