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