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!

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.

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!

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 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!

Lily Shows Off Her New Skills!

 

Miss Lilybug had a very busy week this week.  On Tuesday we visited Cheryl at Zimmerman Speech & Hearing Center and on Thursday we got a visit from Cati, Lily's parent adviser from AZDB!

Lily, as always, thoroughly enjoyed her visit with Cheryl and we learned some more new routines that we can do at home.  Lily's favorite seemed to be the clapping song.  As you will see in the video from this week Lily even signed "more" so that we would sing the song again.  She also wowed Cheryl with her fabulous imitation of "fllllyyyy"!  Lily is picking up much more than we thought she would at this point in her journey.  She has become such a little vocalizer and listener!

On Thursday it took Lily a few minutes to warm up to Cati again, but once she did she really showed off some of her new skills.  Lily even allowed Cati to do some of her speech therapy routines with her.  Lily really shined when she showed Cati how to make the baby listen to her vocalizations!  I think Lily's favorite thing with Cati was the bubbles.  Lily used to be so afraid of bubbles, but now that they have been introduced into her therapy routine she doesn't seem to mind them so much.  It is great to really see her come out of her shell!

 

This week at home we have started to notice Lily really picking up the sounds we all make.  Her two favorites to mimic are kisses and blowing raspberries.  You can be anywhere in the room with her and make either of those two noises and within a few seconds she will start mimicking them.  A new one we have heard this week from her is "ahhhhh".  We discovered this one during her mid afternoon yogurt snack.  I happened to say "Lily say ahhhh" and she in turn said "ahhhhh" and got her bite of yogurt!  We are looking at this little girl that we thought would never hear our voices and seeing a girl who is so obviously hearing our voices every day now!

Stay tuned for more exciting developments next week!  Lily will be attending the BEA gathering where Jacob Landis will be and then attending her first baseball game right afterwards!

Another Amazing Visit With Zimmerman Speech & Hearing Center!

Lily waiting to see Cheryl

We had our second visit with Cheryl at Zimmerman Speech & Hearing today!  Lily responded very well and learned about some new sounds.  She learned "bang" with the hammer, "knock" by knocking on an object, and "up up up down" with the froggy!  She responded several times during our ling sound listening exercises which was pretty exciting to see.  She even dropped a lid into the container after hearing a sound.  Lily also shared her babbling skills with Cheryl during the session!

Lily doing "round and round" with Cheryl

It is really exciting to watch Lily pick up these new skills at this stage.  I know for most parents it is exciting, but since Lily couldn't hear for the first 12 months of her life it is super exciting to see her hear, speak, and acknowledge sound for the first time!  It is pretty amazing!  Then again Lily is pretty amazing (I know I am biased)!

Lily was so excited to play with the big dollhouse today!

Look at that smile!

After Lily did so well in her session today she got some play time!  She had been waiting so patiently to play with the big dollhouse.  So we unleashed the Lilybug and she couldn't have been happier.

We look forward to many more fantastic sessions at Zimmerman Speech & Hearing Center in the future!  Hopefully next week we can get some more video of Lily's fantastic new skills!

Lily visits Zimmerman Speech & Hearing and Kabuki!

Lily's ornery smile...She was ready for a nap!

Lily had her first visit with Cheryl at Zimmerman Speech & Hearing today!  She did very well with Cheryl, especially since Lily is usually pretty shy, and really seemed to like her.  Lily has done speech sessions for the last few weeks and this session was pretty similar, but we did learn some news tips and techniques to use at home.  In this house we love to learn new and useful techniques!  The hardest part of today's session was that Lily was exhausted by the end of it.  It really was a fabulous session and both Lily and I really liked Cheryl!  We are excited to go back next week!

She was asleep within 5 minutes of leaving

Within 5 minutes of leaving her auditory therapy session Lily was asleep in her carseat.  I knew that was coming since she was starting to get ornery at the end of her session.  She is so peaceful when she sleeps!  I was quite amazed that her processors actually stayed on when she fell asleep.  She stayed this way until after we picked her daddy up for lunch.  He had a birthday gift card for his favorite restaurant, Kabuki!  Lily had teriyaki chicken for the first time and LOVED it!  She wasn't quite sure about the chopsticks though.

I think this is how you use these...right mommy?

Okay you try to figure these sticks out

Oh man I can't put them back in their package

By the time we left Lily had given up on her chopsticks and was using them as a drum stick on her seat.  She is such a silly little girl!  We can't wait to see what next weeks adventure to Zimmerman Speech & Hearing and Tempe brings us!