The C.I. Princess' Activation Video Take 2!

Lily Activation June 12, 2013 2 from Michelle Fry on Vimeo.

I finally edited Lily's original video so that everything is the way I want it.  I added a few pictures and changed some of the transitions.  The video still has the same effect every time I watch it!  Absolutely AMAZING!!

From a Lily Sprout to a Lily Bud!

Our beautiful Lily bud!

Lily has done phenomenally well with her new Neptune processors.  We do have the occasional times of day, when she is tired or wants attention, where she will take the headpiece off of her head every 5 to 10 seconds.  This of course makes one of us come running to put it back on.  I sometimes think she is laughing in her head thinking "I have so much control over these people".  Other than these times she leaves them on all day while she is awake and she is starting to recognize some sounds.  I felt so bad when I realized she was hearing me the other day.  I yelled "No" when she touched something and she instantly jumped and cried.  She walked over to me with huge crocodile tears and hugged me.

The last few days have been a journey into the world of life with a C.I. baby.  It is pretty amazing to watch her slowly pick up on sounds around her and to see her explore her processors.  Most of the time the exploring includes tasting them as well as looking at them and pulling on them.

Lily waiting for Lisa (her audiologist) to call us back

Today was Lily's second mapping/programming session and she was such a good girl!  We didn't have the shocked crying that we had with her initial stimulation.  Her audiologist said her nerve response was really great and she is adapting really well to the stimulation.  We are so pleased by these findings!  At the very end of today's appointment we went into the soundproof booth and tested Lily's response to voice and sounds.  It was so amazing to see Lily, for the first time, react to sounds in the booth.  According to the audiologist she is so excited by Lily's results.  She said they were fabulous and that Lily is currently hearing at the level of someone with a mild hearing loss instead of profound.  This alone brings tears to my eyes.

Deep in thought about her next move

Lily is scheduled to go back in for more mapping/programming in 2 weeks.  We can not wait to see the progress she makes in that time frame.  I have said it before and I will say it again...I am amazed at the things we can do with technology.  I had so many doubts and fears throughout the last year.  I was afraid we were making the wrong choice for our daughter, but now I wouldn't change it for anything!

Coming Soon: A blog post that reviews the Advanced Bionics Neptune processor and accessories that Lily received.

The C.I. Princess' Activation Video!

Lily Activation June 12 2013 from Michelle Fry on Vimeo.

After hours of hard work and figuring out all the cutting of an hour and a half long video I have now completed Lily's activation video.  Much to my dismay I realized after saving my video that I had an incorrect transition on one slide in the video.   Other than that I LOVE this video and every time I watch it I get a slight tear in my eye.  We love this little girl so much and it brings a smile to our faces to see her succeed!

The C.I. Princess is Activated!

 Our C.I. princess waiting patiently

Lily was activated bilaterally on June 12, 2013!  We had the onesie in the picture made for her for this very occasion.  She is our beautiful little C.I. princess!

There were quite a few people there for this momentous occasion.  We were all very excited to see how Lily would react to her first sounds.  Lisa, Lily's audiologist, took about 15 minutes to get everything ready before we went into the room for the activation (when you see the pictures of the boxes you will understand why it took so long).  We walked in to see two large boxes displaying the name Advanced Bionics Neptune on the sides.  These were the boxes that Lily's processors and all of her accessories came in.  Talk about overwhelming!

The Neptune boxes

Lisa jumped right into explaining everything to us from how to put everything together and take it all apart to how to change the settings and programs.  Lily was very good and patient through that whole process which is hard to do for a 13 month old.  Once all of the mechanics were explained we jumped right in to the initial stimulation phase!  Everything seemed to be going really well and Lily was happy and content until she suddenly startled and started crying so hard she held her breath, you know how babies hold their breath when they get scared.  We got her calmed down and all seemed to go fairly well after that.  Though she seemed to be pretty sensitive on the right side.  The first couple of times the processor was put on she cried for a few seconds.

Lily during right side stimulation

Once the right side settings were done we discussed what alarms would be put on her processors such as disconnect alarms, so we will know if she pulls them of her head or detaches the cords.  There is also an alarm for low battery, which is great because so far we have had to change the battery twice, that tells us when she needs a new battery!  I really like how handy these alarms are no matter how annoying they can be when Lily wants to disconnect her headpiece every 5 seconds (she only does this when she wants attention).

 We finally moved onto the left side stimulation and, to our surprise, Lily seemed really content with this side.  No tears or startles at all!  She sat on my lap and moved her battery charger back and forth over the table top like nothing was happening at all.  She was just in her own little world.  This of course changed when we had to put both processors on at the same time.  Same as before she got startled when the right processor went on , but she was fine with the left.  She settled down pretty quickly and all she cared about was getting down to explore the room.

This is Lily's Melody monkey from Advanced Bionics

One of the cool things about all of the cochlear implant companies is they all have some sort of stuffed animal pal, that also has cochlear implants, so the kids feel like their pals are the same as them.  I find this to be a really good idea especially for younger kids.  I have looked and can not find cochlear implants for dolls anywhere and this is the next best thing for a small child.  Lily got two monkeys because she got bilateral implants.  She got both Melody and her big brother Buddy both of which have cochlear implants.  How cute is that!

 Lily's big brother, Leland, being silly

 Melody and Buddy and their bionic ears

 After about an hour and a half we were done with activation and Lily seemed to have settled with the new senses of sounds and her environment.  She toddled around the waiting room while we waited for her brother to see the ENT about his hearing aid.  It was amazing to see her go from so startled to toddling around like nothing was ever wrong.

Lily showing off her new C.I. attire

We are looking forward to the coming days and weeks of mappings and therapies to see just how far our little girl can go!  It is truly amazing what technology can do!

A Lily Seed Sprouts!

Our beautiful Lily!

Our beautiful little girl, Lily Ann, came into this world on May 23, 2012 at 2:02 p.m.  Every parent wants to hear that their baby passed all of the newborn tests and screenings before they leave the hospital, we were no different.  The morning after her birth we received the news that our little girl "referred" on her newborn hearing screening.  The nurse tried to be as comforting as possible by explaining that we should not worry as it could be fluid still in her ears or vernix build up that might take a few days to a week to clear up.  My husband seemed to be okay with this explanation, but my heart sank and I just knew she was going to be deaf.  Lily's older brother, Christian, "referred" for his right ear as a newborn as well and we found out when he was nine years old that he has a severe hearing loss in that exact ear.  Needless to say history did not leave me with much hope for my Lilybug to have normal hearing.

2 weeks old!

When Lily was two weeks old we went to have her hearing rechecked to see if anything had changed since her newborn screening.  I remember walking down the long hallway and this very nice lady having me hold Lily, who was sleeping, while she paced these tiny cup-like headphones over Lily's ears and several small electrodes on her head, which measure her brains response to sounds.  I sat holding Lily, my husband right next to me, as the test ran.  The whole time I watched these numbers change that I didn't understand.  Towards the end of the testing my husband whispered that the numbers where supposed to go above 120 and Lily's the whole time were no higher than 20, most of them being around 18.  When the testing was done the technician told us that Lily was still referring in both ears, but like the nurse in the hospital, she tried to reassure us that it didn't mean Lily was deaf.  I made it all the way to the front doors of the building before I broke down and cried.  I felt so at fault for her being deaf.  I knew I wasn't deaf, but I knew I carried the gene in my family.  I called my mom who couldn't seem to understand why I was so upset, after all her sister is deaf and it didn't seem like a big deal to her.  I was just so worried about the struggles she would have growing up.  We took Lily's "referred" status to our pediatrician so that we could be sent to a specialist to have more testing done.  This new test was called an ABR (Auditory Brain Stem Response) and had to be done under anesthesia at the age of three months.  This took place on September 30, 2012.

All dressed up for her ABR

This was a long day and very stressful for my husband and myself.  Lily was not allowed to have any breast milk after 5 a.m. and only clear liquids until 9 a.m. with the ABR being at 11 a.m.  You could say we had a pretty cranky baby on our hands for a while.  At about 10:30 we were called back to the PACU so that we could meet the audiologist and anesthesiologist that would be working with Lily that day.  I managed to rock Lily to sleep in between all of the visits and questions prior to the procedure.  We were allowed to go to the procedure room with Lily until she was put under and then we were escorted to a nice big sitting area to await the results of Lily's newest hearing test.  We managed to find our way to the cafeteria and get some food which helped to settle my nerves for a little bit.  As an hour went by I got really nervous that something had gone wrong.  Little did we know everything went really well but they were trying to calm Lily down before coming to get us.  She had woken up almost immediately after the testing and was screaming for her milk.  We walked back and my husband held Lily and fed her some milk while the doctor explained the results to us.  I had warned her that I was going to cry, but that I had prepared myself for being told she was profoundly deaf.  As the words came out of the doctors mouth that Lily was profoundly deaf in her right ear and severe to profound, right on the cusp of profound, in the left ear I must have gone into "mommy" mode.  I didn't cry and it was a very unexpected reaction.  We were informed that she would probably be a candidate for cochlear implants if she did not get benefit from her hearing aids.  We made it very clear that our mode of language for her would be sign language and verbal communication, if she got benefit from her hearing aids.  We left the hospital and for the first time I didn't cry and my husband did.  All of this time he had held out hope that his little girl was hearing him say "I love you".  My tears came later that night when I thought about how I love to "give" songs to my children that hold meaning and she may never hear those songs because she would possibly never hear.  We had also decided at this point that Lily would not get cochlear implants until she was old enough to choose, but we would allow hearing aids.  Let me just say that by 5 a.m. the next morning our minds had changed, after my 2 a.m. wake up to research cochlear implants and the language development timeline.

The morning of September 24, 2012 came and it was time for our little Lilybug to get her hearing aids after weeks of fighting insurance and tears.  At daddy's request Lily got baby pink hearing aids with clear pink ear molds that contained pink glitter.  Believe it or not they were beautiful when we saw them! 

Lily's pretty pink hearing aids!

She doesn't seem to mind them

We went through some training on how to put them in her ears, change the batteries, etc.  Then it was time to put them on Lily!  For her right ear she didn't seem to even notice that there was anything turned on.  Then came the left ear and Lily cried hysterically when it was turned on.  We figured that was a good sign for the left ear.  The appointment went really well and Lily wore her hearing aids with very little problems.  We continued to look for signs that she was hearing anything with her hearing aids, but to our dismay she didn't seem to be.  In November 2012 she switched to a multi-specialty clinic and had her hearing tested with her hearing aids.  We were told by her new audiologist that she was sorry, but Lily did not seem to be responding to any sounds below 90 decibels with her hearing aids.  90 decibels is where the line for profound hearing loss starts.  At this time we knew we were wanting to go down the cochlear implant road and we had even already decided on the company we would go with.  From this point all we needed to do was all of the health testing to make sure Lily was physically healthy enough for the surgery.  This testing included EKG, MRI, CT scan, a psychological evaluation for us, some vaccines for Lily, and a pre-op physical around a year old.  We did have one other hearing test done as well in March of 2013 that came back very similar to her testing in November.  We were able to order her cochlear implant processor in February 2013 and we had chosen the Advanced Bionics Neptune (waterproof and swimmable) processor for it's ability to be worn in water.  

Advanced Bionics Neptune Processors

The Neptune, as you can see, is pretty small.  It comes in many colors and they can be mixed and matched.  We chose white, princess pink, and ocean blue for Lily.  From this point we waited for Lily to get closer to a year old so that the implant team could meet to discuss her candidacy.  Her team meeting was held on  March 28, 2013 and a few days later we received the call that everyone agreed she would be a good candidate.  This was very exciting for us!  On May 9, 2013 Lily was medically cleared by her pediatrician and had her last two necessary vaccines for surgery.  We got the call a week before her first birthday to set up her surgery date!  At this time we had scheduled her surgery to be on her birthday.  A few hours later we received and e-mail stating that there was an issue and we needed a different pre-certification for insurance so we would need to postpone surgery until May 30, 2013.

I bet she will be a dancer!

While we awaited Lily's surgery date she turned 1!  We had her birthday party on May 26, 2013.  She is one of the happiest one year old babies I have seen.  You can see her beautiful first birthday picture above.  This is a favorite picture among our family because she looks like a beautiful ballerina!

May 30, 2013 in the car ready for surgery.

The day of surgery had finally arrived and we had so many emotions that didn't seem normal for having such a healthy baby girl.  We got up bright and early so that we could pick up grandma and be at the hospital for check in at 9:30.  Lily had not been able to eat since midnight, but still seemed to be her usual happy self!

Mommy and Lily waiting for surgery

Daddy and Lily waiting for surgery

At about 11:20 the surgeon came to see us and let us know that Lily would be going back very soon.  Within a few minutes the anesthesiologist came to talk to us followed by the nurse who would take Lily back to the O.R.  Lily was so cute when the nurse took her from me.  She pulled her hand back like she was saying "whoa who are you and were are you taking me".  As we watched the nurse take our baby back for surgery we both fought back tears.  It was hard to hand over our little girl.

We were told surgery would take about two hours so of course we watched the clock.  I went to the gift shop with my mom so I could keep my mind off of the tears that were trying to well up in my eyes.  Bobby sat in the waiting room with Christian, our older son.  My mom and I got back to the waiting room with about an hour left of the surgery time.  That was the longest hour ever!  When the two hour mark hit both Bobby and I got extremely anxious.  My mom tried to calm us by telling us the doctor is probably doing a really good job because Lily is so cute.  About 15 minutes past the 2 hour mark Dr. Syms came out to tell us that everything went really well and they would call us back shortly to see our baby.  Within 15 minutes I was holding my baby while she drank some milk and tried to wake up a bit more from her anesthesia.  She was so beautiful even wrapped up looking like princess Leia!

Our Lilybug after surgery trying to wake up

The next morning we got to take her bandages off and she was up and back to her usual smiling self.  She did seem to be a bit more daring though, as if having surgery now made her capable of many more daring feats than before.  

She just had her post op check up with Dr. Syms and was cleared for her initial stimulation/activation on June 12, 2013, also my husbands birthday.  I chose this day so that she could hear her daddy say I love you to her for the first time on his birthday!  Is that not the best birthday present ever!

Ready to go see Dr. Syms and get the all clear for activation!

Playing while she waits to see Dr. Syms on June 7, 2013

So this is the story that all leads up to our Lily in Bloom!  We can't wait to watch her bloom and grow as she learns to hear and interpret all the sounds that life has to offer!  We hope you will enjoy her story as much as we do!