Then Something Amazing Happened!

Amazing bond!

Lily's first language is ASL, she has been using sign language since she was 5 months old.  After she received her cochlear implants we introduced her to spoken English.  It has been a really confusing battle on some fronts for us as a family.  Most of the medical professionals we came in contact with insisted that we should not sign with Lily because it would slow her speech development.  However, I have many deaf family members who do not have cochlear implants and use sign language to communicate.  We felt it was very important for Lily to continue to learn ASL and be able to live in both worlds, the hearing world and the deaf world.  This was somewhat difficult for us because we are hearing parents.  We are learning sign to keep up with Lily, but she is a fast learner.  Obviously the biggest part missing is that we are unfamiliar with the deaf culture.  To truly be in both worlds she needs the language and culture from both, right?

Lots of learning through play in this picture!

A few months ago we were introduced to Stacy, who would soon become our family’s deaf mentor, through ASDB's toddler class that Lily attended this year.  She had come in to give parents information about the deaf mentor program.  Right away I knew it was something we were interested in!  Within a few weeks we had our first home visit.  We did not have an interpreter, but given the knowledge we currently had as a family with sign language we were able to communicate pretty effectively. Stacy was AMAZING at making sure we understood what she was signing.  Soon we had a second visit with Stacy and this is where something happened that we had never seen before....Lily loved her!  Lily is very shy and even still won't talk and interact with family outside of the members who live in our home.  To see her sit in Stacy's lap, sign with her, and interact like she does with family almost made me cry.  My daughter was connecting with someone she had only met once before and it was like she had known Stacy all of her life.  I think both Stacy and I agreed that Lily knew they were alike and their personalities meshed amazingly well.  Shortly after our third home visit I realized Lily was learning sign language incidentally during our visits.  We had been told this happens with spoken language and assumed it must be the same with sign language, but had not realized it so obviously before.  Stacy had brought a game called ASL Word Match to the third visit.  Lily sat with us for most of the game while we played and eventually got up to go play with her baby dolls.  We were all sitting on the floor playing and after Stacy had won the game she showed the boys how to sign "hahaha".  Lily was in her own world playing so I would have never guessed that she picked that sign up.  Little did we know she did pick it up and used it just a few days later!  Lily has also picked up Stacy's sign name and uses it regularly when talking about her.  Stacy has become a beloved member of Lily's world very quickly!

 

We have had regular home visits with Stacy over the last several months and it has been a great experience for our family.  This program has given a great support system to help us understand the deaf culture, to help us in learning more ASL through immersion, and Stacy recently supported us with the IEP process which was all new to us.  It was great to have a deaf persons perspective and not only that, but a parent of deaf children's perspective.  It can all be very confusing and overwhelming, especially when you know you have to fight for what is most appropriate for your child.  Stacy was a great resource when we had questions about learning both languages, what appropriate goals might be for school, and she gave us a lot of information on the IEP laws and how they pertain to deaf students.  We are proud to say this helped us to place Lily at PDSD for preschool next year!  We feel that the knowledge of deaf culture, ASL, and the relationship that we have been able to expose Lily to have been invaluable with this program!  Stacy has quickly become a true mentor to Lily and our family and we will forever be grateful for the experience and knowledge!

A home visit with Stacy where she was teaching Lily how to fingerspell "Anna".

While we really wish this program would have been available when Lily was much younger, we are so happy that it is available now.  We hope that the program continues to grow and many families like ours can benefit from it!

Signing ASL books with Lily

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!

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!"

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!

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!