6 months post activation

Time really goes way too fast.  In some aspects it feels like Kylie has had two CIs forever.  In reality it's only been 6 months since her left CI was activated.

Today was Kylie's 6 month post activation testing.  Kylie walked into University of Miami with her typical smile on her face, alerting the doctors she was ready and this was going to be easy.  We got into the booth and the testing started.  Kylie was breezing through it.  What we didn't realize is that even though we had taken the right CI off, Kylie when we weren't watching put it back on.  Let's restart the tests again.

Kylie was given sentences to repeat such as:

He drew a mustache on his sister's picture (No - I am not making this up)

She was given a list of 50 words to repeat back. Some if they were a past spelling word she felt necessary to not only repeat it but to spell it too.  (A little overachiever)

She was also given sounds to alert when she heard at various levels.  

The outcome... Kylie is doing phenomenal with the left CI and is at normal range for hearing in all but two frequencies.  She is way ahead of where she was at this point with the right CI.  AMAZING results. Plus, while we were there they tweaked the programming for her left CI to give her better access to sounds on those two frequencies. 

Testing was then done with both CIs and she successfully repeated 47 out of 50 words.  Missing those, that and thick.  The observation was made that with her missing her two front teeth the th blend was hard to produce.  Try it.. say that, where do you place your tongue to produce the sound?  Imagine if you didn't have teeth.  I'll take it.  To put this in perspective, before the CIs Kylie could repeat maybe 15 out of 50 words, on a good day!

I have said it a million times and I will never stop saying it, we are truly blessed by the amazing technology that is out there to assist Kylie with her disability.  Odd, I don't think I have ever called it a disability before as there is nothing stopping this girl. Being deaf and hard of hearing has only made her that much stronger! 


Take a look at this blog post and old video in 2011 when Kylie got her first hearing aids so much time has passed! 

http://livinglavidalum.blogspot.com/2011/12/kylies-new-hearing-aids.html

We are blessed

Today was a hectic day overall.  I was late to pick up Kylie, it was raining, and there was a book fair, ice cream social at school the works.  Homework felt like tug of war.  Both Kylie and I were just frustrated and working to get it all done.  

Our doorbell rang and we both looked at each other and went to see who was at the door.  Standing there was Evintz (we call him Evan) our UPS driver.  He always delivers our packages with a smile has a secret hand shake with Kylie and stops to talk to Kylie. He goes out of his way everyday and is always thinking of us!  Today when we opened the door he was holding a pink box with a bow.  My first reaction was wow what cool marketing that it comes wrapped and what store is that from as I surely need to start ordering from them.

Quickly it hit me that the box he was holding was from him.  He wished Kylie a Happy Birthday asked her about her birthday party and gave her this large box with a smile. Tears formed in my eyes and Kylie was grinning ear to ear. 

The news is full of bad stories and negative things.  However there are so many good things going on in the world that we don't see or treasure! This is an example in life where we are reminded that we need to stop and smell the roses.  I don't know how but we are truly blessed with some amazing people in our lives.  We will continue to pay it forward and hope to give back as well. 

After Evintz left, Kylie and my attitudes completed changed it was the right time for a intervention.  We are so grateful for this act of kindness and blessed to have him in our lives.  Thank You Evintz, you do a lot more than deliver packages! 

All about Kylie

Today I received a text from Kylie's Deaf and Hard of Hearing teacher, Ms. Ivy.  We have been fortunate to have Ms. Ivy for 4 years now working with Kylie.  Today, Kylie apparently had to fill out some information today about herself.

I have to laugh at them.. she is my daughter!

 

Adam and Target... Love this girl! 

I love that I call people!  She asks me EVERYDAY about my ships but today she decides that I call people.  Brian and a computer, now that is spot on! 

Programming Time

Technology amazes me... I keep saying that but it really does!  Kylie had a programming appointment today for her cochlear implants.  She is scheduled for one a month.  What typically happens is they connect her processors to the computer and run some sounds and  the computer makes a recommendation on the settings for the implants.  The doctor than does testing and tweaks the levels accordingly. (That was the simplest way to explain a very detailed process!)

So, Kylie has been having a hard time differentiating between aba and ada.  If you say them out loud it is hard to distinguish between the B and D sounds.  B/D/G sounds the same if you say them fast and while Kylie knows Boy starts with B she might say D.  The doctor went in and tweaked the frequency higher for B/D sounds and tested her and she could distinguish them (not perfectly but 90% better than prior).

Imagine if you could say I am not good at math and they went and tweaked your programming?? Pretty cool that these devices are able to help Kylie like that!! 

Kylie is doing AMAZING and everyone is super impressed with her progress with the two implants now.  Her speech is getting clearer and clearer and she is much more confident about talking to others. With such a good visit today we don't have to go back to October.  While we love the doctors and the office, knowing we can go two months means Kylie is where she needs to be.  

I am so excited for her to start school on Monday and interact with teachers she has had in the past and see if they see the difference in her speech!  

Only onward and upward from here! 

Of course one thing remains through it all.. Smiley Kylie (with crazy hair!)

All I want for the first day of school is my two front teeth

Kylie lost her second front top tooth today!!  She is so excited for the tooth fairy to come tonight she asked to go to bed early!  She is also excited to show all her friends at camp her missing tooth.  Over the summer she has lost both her front teeth.  Bonus for Mom and Dad  - She pulls them out herself.

Her note to the Tooth Fairy....

Ten days vacation..

Ten thoughts about our Ten Day Vacation  (written by Kylie (her words typed by Mom) and Tricia)


10.  10 days on the road visiting 3 states, over 2,000 miles on the rental car (which was jammed packed with bags and things) and staying in four hotels. That's like 1 million minutes in the car.

9.    Eating out for every meal, I am personally not a fan but Kylie thought it was the coolest thing.  I ate pancakes nine out of ten days! My favorite pancakes were ALL of them.

8. Trying / Experiencing new things. I saw lightning bugs for the first time, June bugs,  paddle boating, mountains,  deer up close, swimming (attempted to) in Lake Michigan and the Lincoln Park Zoo.

7. Great Wolf Lodge - what a cool fun place to spend a few days.  I loved every slide and going again and again and again. 

6. GPS Gene - If I have been there once I know how to get there again.  Um, not the case!

5. Corn Fields - They are endless, seriously people that is all I saw for hours!!  Made me hungry though for some corn on the cob, cornbread, corn casserole, what about corn salsa?  I started to think up recipes.

4. Top Hits.  After almost 22 hours in the car, Dad and I knew the rotation of songs on Sirius Hits One.  It's funny when your Dad starts singing When I see you again and knows all the words.  

3.  Seeing / Meeting Great Grandpa and Great Grandma.  Unfortunately, my Grandpa (Kylie's Great Grandpa) has been in the hospital for a few weeks so we went to stop and visit with him and my Grandma. I prepared Kylie for seeing someone in the hospital as so far she hasn't seen anyone in a hospital besides herself.  I forgot to tell her he had an amputated leg and the first thing she saw when the nurse came in to check on him was he was missing a leg. She also saw him receiving dialysis and I explained what that meant to her.    I saw his fake leg and met their dogs Lucy, Charlie Brown and Ana.  That Ana was crazy. Great Grandpa said I talked a lot and I called him George, he smiled.  Great Grandma gave me some dolls her name is Patricia like my Mom.

2.  Everyone is your cousin.  Okay well not really.  However, we (the cousins) had a hard to explaining to our kids who everyone was so we decided saying that they are your cousin was the easiest.  It is so awesome to see the next generation all playing together like we all did!  Brody (he liked to dance with me and play hide and go seek), Nicholas (he liked to throw the glow sticks and helped me catch bugs), Zoe (shared dancing a), Dalton (he danced all night), Baby Oliver (not a cousin nor a baby) , Baby Ethan (he came to the wedding in a basket) and Nicholas' brothers (Matthew and Lucas -they were tall)

1.  Attending two weddings! 

Katie (my cousin - no really she is) married her soulmate Shawn in West Virginia.  Almost 15 years (WOW I feel old) ago Katie was a flower girl in our wedding and a week ago she walked down the aisle, with an amazing backdrop of trees and mountains and a lake (something us Florida girls don't see everyday),  embarking on the next chapter in her life.  They had by far the coolest and best tasting wedding Pi cake ever!    Katie's wedding was awesome and they had candy and I danced all night.  And glow sticks (I am still carrying those in my purse.. I am thinking they don't still work but she wants to keep them in her memory book). 

Dani married her soulmate Justin in Chicago.  Dani was in our wedding as a Junior Bridesmaid.  Dani is Kylie's godmother and Kylie was a flower girl in her wedding.  Dani met her husband on Match.com (it does work!)  I didn't get to throw the flowers I had to carry them by my belly button and make sure the ring helper made it down the aisle. I got ready with all the girls for the wedding and my feet hurt after the wedding so I wore my pink flip flops.

Here is our wedding with Katie being the flower girl closest to my bouquet and Dani is to her right.  I am so proud of both of them for the women they have become.

We had an amazing 10 days with a lot of laughs!  I can admit I am so happy that tonight I don't have to dig through a suitcase to lay out my outfit for tomorrow.  This was an amazing trip one that I surely won't forget! or will Kylie! I think I convinced Kylie not to get married until she is 41, phew!! Thank you to all... now good night!

Not missing a beat

Did anyone notice we are already half way through June?  Where exactly did this month go already? Summer is going to fly by with a blink of a eye! 

We haven't missed a beat in the Lum household.  We are trying to enjoy every second of the summer and then some.  Sleep is not necessary but hours of fun and family time is! Now with two cochlear implants that are waterproof there is no stopping us!! 

Here is some fun we had at a recent Luau Party...

 Welcome to the Luau Party! 

Olaf by the Pool

The Small Frog Splash Slide

The Large Slide .. First by herself than Daddy's turn

Spider Man

Tug of War

Dunk Tank.. Kylie was taunting the kids to knock her in

Then it was Brian's Turn

The Last Day of Kindergarten

So amazing how fast time goes!!  Here is Kylie on her last day of Kindergarten, I also included the picture of the first day. We are moving up to First Grade! 

Last Day

First Day

Is the music on??

Ever since Kylie was little she has had an iPod alarm clock radio in her room.  We used to play Little Einstein’s songs, Jewel, Enya songs to soothe her to sleep.  We felt the music did the job, perhaps because we fell asleep listening to it through the monitor.

In the last few weeks we have left her room confused, sad and perplexed.  Every night she says her goodnights, tells you what she wants for breakfast the next day, the book she wants to read tomorrow night, the order of the activities for the day, whatever it may be.  Then she gives you a hug and kisses and says goodnight.  Lastly she takes off her princess ears.  The last few weeks after she takes off the princess ears she looks right at you and says, “Did you turn the music on?” 

Think about it for a second, she can’t hear anything.  She has to ask you if you turned it on because she can’t hear it to validate if it is on or not and you stand there thinking. What do you do?? One side says you could say sure is and off you go but that would wrong.  You turn it on even though she can’t hear it because that is the right thing to do.  So tonight as we walked out of her room we set the sleep timer and on came the music maybe more for our benefit than hers.  However, she can’t go to sleep at night if the music isn’t on.  In her mind it is a check off her list before she goes to sleep.  Blanket – Check, Kisses – Check, Music on Check.  Sleep is next.  While it does leave us perplexed… she is always Smiley Kylie! 

A++++++++++++++++++++++++++++++

Today's appointment at University of Miami for Kylie was an A+++++++++++++++ appointment.  It's hard to believe how far we have come,  when we first started having appointments, Kylie's cooperation levels weren't exactly perfect. (Meltdowns were common and bribes were abundant) Now, she walks in like she owns the place and sits patiently and participates as she is needed.

Today wasn't just an A plus due to Kylie's behavior, it was an A plus as Kylie has made HUGE progress since being activated less than two months ago on her left ear. The reaction from the doctors is this is a lot faster and farther than they would anticipate Kylie to be at at this point.  Music to our ears!!  While you probably aren't as familiar with levels you should be at for hearing you are probably familiar with the 20/20 Vision.  Well Kylie's right and left ears are very very close to 20/20.  Is that not amazing to be labeled as Deaf and Hard of Hearing and now be at these levels??  That's technology, hard work and amazing professionals (our small village)!!

Here is a picture of Kylie's Audiogram from 2011 the straight line around 20 is normal hearing ideally you would want to be at or above that.  Kylie's left ear is the line that starts around 50 and drops significantly. Her right ear is the line that is at the bottom. You can see how she was missing out on so many sounds based on what she was hearing. 

Here is Kylie's Audiogram from today.  See the lines at or around 20?  LOVE THEM!

This means that Kylie has access to hear all sounds. This does NOT mean that she is walking around with perfect pronunciation and is now talking clear.  This is all learned and something she works hard on each day.  For instance, we live in Coral Springs.  Kylie says Horal. So we practice and practice.  Then there is Corn for what comes out like.. You get the picture! 

The technology incorporated into her cochlear implants is amazing and we are blessed that she was born in the day and age of technology. We are still excited to see her use the Bluetooth and take a phone call in her head!  For now practice practice practice and her speech and vocabulary will improve. One step at a time! 

The doctors were so impressed with her results today we went from bi-weekly appointments to not having to come back to July.  

Our Smiley Kylie -- another hurdle to check off the list! Love her to pieces! 

Happy 2nd Birthday Right Cochlear Implant

Kylie was very excited last week to celebrate her second birthday for her right Cochlear Implant.  I know it probably sounds crazy but really it is a special time to celebrate hearing for the first time and reflecting on the progress that has been made. We celebrated with a cookie cake and a few small gifts, I mean what is a birthday without a Publix cake?  Kylie was a little upset that there was no surprise for breakfast so what about pancakes with a candle?!?

The right Cochlear which has now been activated over 2 years is doing very well for Kylie and she has adapted.  Not saying her speech is perfect but she is becoming less unintelligible.   

The left cochlear implant has only been activated about a month in a half and huge huge progress on that side as well.  We take off the right processor just to work with Kylie on the left side and she is recognizing words and phrases.  If you ask her to repeat what she hears she is doing pretty good.  If you say mat and map she is not distinguishing the ending sound and at times says the wrong word.  It's all a work in progress and we are thrilled with her progress this far.  

Two mornings ago the oddest thing happened, Kylie came running out of the bathroom holding her ears and saying, "Mom there is a weird noise in the bathroom."  Funny how as a Mom we go running right in with no fear, I mean what if there was a grizzly bear behind the shower curtain or something but no we run right in.  After checking everything out I didn't hear or see anything unusual and then it hit me.  We just changed her program on her left ear and she was hearing the toilet flush.  I took her back in and flushed it again so she could make the connection and her comment was, "WOW it is LOUD!" It is amazing to me the sounds we hear and what we take for granted.  

Overall things are wonderful with her cochlear implants and her world is changing daily.  We are faced with a current challenge of riding her bike.  See with two cochlear implants wearing a bike helmet is challenging as it pushes the devices off her head.  She has to constantly stop and fix them.  If you know of any solutions please let us know. I am sure a head band or something first than the helmet will work just looking for ideas! 

With Smiley Kylie nothing will stand in her way :) 

Here is a picture of a dog Kylie drew and painted from art class.

It's been a week

It is hard to believe that it has been a week since Kylie's left cochlear implant was turned on.  Everyone asks us how is she doing, is it working etc?

When they turn on the implant think of it like the volume button on your TV.  She's at a level 1 where the goal is to be at 20.  At level 1 some noises and even voices make her jumpy.  The goal is for her to start to be able to distinguish sounds she is hearing. (To the "experts" that read the blog - I tried my best to explain it!) We have been practicing nightly of just wearing the new CI and learning and teaching sounds with her.   So.. that leads to the doctor's appointment for today.  Unfortunately I wasn't able to attend today but got a great debrief from Brian.

In the beginning Kylie has to go weekly to get new programming, they work with her and set three programs for her cochlear.  Ideally she uses program 1 for a few days (think volume 3) then program 2 and then program 3 and then we are back again to get more programs.  Each program increases the access.  Keep in mind this doesn't mean she will speak clearly when she is at 20.  She has to be taught like a baby all over again how to talk and what to say.  The benefit she has is she is so far along with the other ear.

So when Kylie went to the appointment today the Doctors were THRILLED with her progress so far.  They even questioned if they accidentally left on the"older right cochlear implant on".  The sounds and progress exceeds where she was at at this point on the right side.  We owe this to all the doctors and professionals that work with Kylie everyday.  Not to mention that Kylie when faced with a challenge does not back down (hmm no idea where she gets that from). 

We are so happy that the implant is working and she is gaining access from it already.  Imagine the blog post in six months.  Will you ever know she was deaf and hard of hearing?

Check out the videos from today

The first video shows the doctor testing Kylie with sounds with only the new CI on and she has to repeat.  

The second video shows Kylie being the doctor (which she wants to be) and testing Dr. Myriam with the sounds.  Since Kylie has been going to University of Miami she always gets stickers when she does well.. So she repeated the favor. (I love the white coat - Can I retire yet??)

The Left Cochlear Implant is Activated!!!

Today was the start of a new journey with the new CI on the left side.  Kylie did really well with activation and I will post some of the videos below. The differences we saw from the Right to the Left with activation was very different.  Smiley Kylie remained smiley whereas the last time she was a little more nervous and cried with the new sounds.  

The best way I can explain the activation is Kylie's ear is a baby and brand new.  She has to train her brain to hear the sounds coming through the Cochlear Implant.  You could probably say Bob and Kylie and she would turn for both.  She is recognizing there are sounds but she is not sure what she is hearing.  However, over the day she has made improvements. 

Kylie is allowed to wear both implants to school but at home she needs to only wear the left one so that she doesn't favor the right one which of course is easier for her.

Cochlear Implant Fun Fact - Did you know that since Kylie is bilateral it doesn't matter which cochlear processor we put on in the morning on which side? (Mom I can see your quizzical face right now!) The internal components know and will adjust to the program for the corresponding ear.  So if she accidentally puts the right processor on the left ear she will still get the programming built for the left.  How awesome is that! 

It's been an amazing day, however honestly it has been gut wrenching as well.  I know it will all get better, however watching your daughter struggle and not even know her name is hard.  I could easily put on both cochlear implants and she could hear but that wouldn't be helping to train her brain and I can't do that even if it is the easiest thing.  Kylie is eating her dinner and watching TV now which she has advised us she can't hear.  One day at a time! 

As I waited for the videos to upload to YouTube so I could share them, I played my go to music Maroon 5.  Animal came on and Kylie with one implant on turned and said, "Mom, Animal again?"  I cried that's a good sign!!! 

Here is the video when she was first activated.

Here is her listening for sounds when she hears something she has to put her card on the table.  

Here is a sample so I could show everyone on how she hears with both implants and what happens when I take the right one away. 

 

 

The Universal Language

I couldn't sleep well last night.  I am not sure if it was because I had gone to see Theresa Caputo last night or the anxiety of Kylie's Cochlear Implant activation today.  I am sure a combination of the two and then some.  

When my alarm went off to go to the gym this morning at 4:40am, I got up in intentions of going but found myself making my way upstairs to Kylie's room. All I wanted to do was check on her.  I quickly climbed in bed with her and laid next to her.  She was still sleeping but wrapped her arms around me and we cuddled and slept. I am not sure slept is the right word, Kylie is like a portable heater when she gets next to you! 

When the alarm went off in Kylie's room this morning she opened her eyes and was surprised to see me in her bed even though she had been plastered to me for the last hour plus.  

The point, deaf or not deaf cuddles and hugs are a universal language.  I am sure all parents would agree it is something you treasure and you don't want to let go.  Life gets SO busy sometimes and being able to stop for a minute and cuddle meant the world!! 

Easter Break

We had so much fun this Easter with my parents in town.  Kylie anxiously awaited the Easter Bunny, she couldn't wait to wake up and find all the Easter eggs.  It is all she talked about for days and she wasn't disappointed.  Her favorite gift was walkie talkies and she thinks the Easter Bunny is super cool.  

Kylie and Grandpa coloring eggs

Kylie excited on Easter morning 

My parents took Kylie to the beach on Saturday where they rode bikes as well as went swimming and surfing.  I think Kylie wants to surf like her Dad (Brian).  Oh boy Flowrider all the time for both of them.  FUN FUN!!

Watching the Waves

Riding the Waves

She did it! 

Although, Easter was wonderful we are counting down the minutes until our appointment on Wednesday to have Kylie's Cochlear Implant activated!  So so excited! 

Back to School

Just a quick update, Kylie is back to school after being off for a week for the surgery recovery and then Spring Break.  She is doing great and activation for the second CI is scheduled for April 9th. She still has some suture tape behind her left ear that they said would fall off on its own.  I am not in a rush to help pull it off!  The activation is just a few short days away.  Smiley Kylie all the way! 

The only small downside to the surgery is now Kylie really can't hear when she doesn't have her princess ear in.  She did have some residual hearing in her left ear which she no longer has.  So at night when you take the princess ears off she can't hear you say, "I love you!"  It breaks my heart as I used to be able to tell her that from the top of the stairs and she would scream back but now she doesn't hear it. Please don't take that the wrong way, I am very grateful that the technology allows her to hear for 99.7% of her day! 

We are testing out an Aqua case which allows Kylie to wear her CI for baths, swimming etc.  The case seems like an Outterbox case for your iPhone so it is very cool.  It really helps us in engaging in conversation while she is taking a bath (which normally she can't hear us).  Makes the whole process super easy!  She modeled it while covering all the proper parts tonight.  

Her CI processor is in the case that we can put around her arm that is waterproof.  She can submerge herself in water etc. 

On a final note - The question of the night is when will she grow hair under her arm pits.  Seriously she is 6.  So not ready for this!! 

She's on the mend..

We took Kylie to her post-op visit with her surgeon on Tuesday.  He was thrilled by her progress and advised she is healing very well.  She can officially wash her hair/head this Saturday.  A week of no hair washing is quite interesting.  She can resume "normal" activities in about 10 days.  We discussed her going back to school but nervous as she can't run and play, get sweaty, get bumped, fall down etc so we decided to keep her home with more time to recover.

Here is a picture of her and Dr. Telischi.  Kylie made him a robot mask and one for her too. They are both goofballs.

Kylie has finished all her classwork and homework so she decided to make a train with boxes and leftover parts around the house.  It included headlights, wheels etc.  

Grandma also took Kylie to Butterfly World to get a little bit of a break outside of the house.  She loves the birds and the butterflies.  Happy girl for sure!  

Today, along with Grandma she is going to go to school and surprise her friends for about an hour. Today is a half day before Spring Break starts tomorrow.  She's been practicing, "I'm back!"

The Leprechaun Strikes the Lum Househould

One of Kylie's favorite things she remembers about Pre-K, thanks Ms. Grace, is St. Patrick's Day and how the Leprechaun came and messed up the classroom and caused quite the stir! 

Well since Kylie can not go to school the Leprechaun came to her!  She woke up this morning and ran down the stairs and said, "Come Quick, I can't believe this!"

He wrote on her mirror with marker! 

The Leprechaun even painted her nails while she was sleeping (Grandma was checking his work - wink wink)

He flipped her table upside down and then left Minnie Mouse there reading a book about St. Patrick's Day! 

He decorated the kitchen table with flowers and green confetti 

Kylie showing us the mess the Leprechaun made on her floor.  She said, "I just vacuumed it yesterday!" 

The Leprechaun even went potty! 

We hope you have a fantastic St. Patrick's Day.  

THE END.. The Beginning

The End.  No this is the beginning.

Around 2 and half years old we started the process of identifying why Kylie’s speech and vocabulary was not at the level for her age.  What we thought then would be speech therapy sessions and working on flash cards turned into finding out our daughter was deaf and hard of hearing.  She has gone through more hearing tests than you and I have combined, CT Scans, MRIs, ABRs, EKGs, Halter Monitors and therapy sessions. We tried hearing aids in both ears and increased amplifications with not the results needed.  Keep in mind she did all of this while remaining our Smiley Kylie.

We were referred to University of Miami and to look at Cochlear implants as the next option.  Cochlear what?  Although in the beginning the question of why us, crossed our minds many times by this time in the process we quickly embraced the angel we were blessed with raising on earth.  Months of testing ensued to see if Kylie was a candidate for a cochlear implant and papers were prepared for the insurance.  More waiting, months of waiting and several back and forth conversations between University of Miami and our insurance and finally the approval for the cochlear implant for the right side and surgery is scheduled.  Surgery is completed Kylie is doing amazing and we move forward.

But wait, like us doesn’t she need two ways to hear not just one.  More tests, more insurance back and forth and that brings us to today, two years later!.  Surgery day for cochlear implant number 2! 

This is THE END of a process that started 4 years ago.  Kylie now has the equipment she needs to succeed in life.  From this point forward we just need to fine tune and update her implants and immerse her with language, therapy and love to grow and “catch up” to the levels for her age.  This is THE END of something we have spent so much of our time on.  This is the final exhale, the END of the road, the END of the journey. 

Although this is THE END, this is the beginning of a new road and a new journey and one we are so grateful that she has the ability to be on.  We are truly blessed by the amazing doctors, professionals, family and friends that have held our hands, encouraged us, played a role and helped make this all happen for our little girl. 

Now watch out world cause this one is going to take the world by storm!  

Here are some photos from today

 Time for a funny photo with Grandpa and Grandma in the hospital parking lot at 5:30am

 

Kylie and Daddy 

Hospital Gowns - What happened to the back??

Almost time to go back so let's do a funny photo or two 

Transport can I get a quick ride to the Operating Room - Smiles and giggles included

We are out of surgery and resting

All she wanted was to wear 

her cape on the way home.  In my book SuperGirl is very fitting

Resting on the couch at home and hiding a smile