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??)