Kylie's New Hearing Aids

 WARNING THE VIDEO MAY MAKE YOU TEARY EYED.  This isn't the best video as we didn't have a personal  video company at the appointment today.  However, I think you can see the look on Kylie's face when the hearing aids are turned on for the first time and her reaction.  Next time I will ask for a hair and makeup personnel prior to the video.    She is doing great and I sneezed from the bedroom with the door closed and she says Bless You Mommy! So touching!!

It's Beginning to Look A Lot Like Christmas

We have been busy the last few days preparing for Christmas.  The stockings have been hung, the Christmas baking has begun and the Christmas parties are in the process of being attended or already have been attended.  Kylie's social calendar has been quite full the last couple of days.  

Here are some shots at Kylie's school holiday party. 

 

Here are some shots of Kylie helping bake some 

Holiday Cookies :)  Yummy! 

 

 We also are excited that tomorrow Kylie will be getting her hearing aids!  We can't wait to see her reaction positive or not so positive!

A Day of Testing at Joe DiMaggio Hospital

With Kylie's recent hearing loss diagnosis, we were introduced to an amazing Pediatric ENT.  Her ENT ordered a battery of tests and today we had the majority of them performed while at Joe DiMaggio Children's Hospital.  This hospital was the Rolls Royce of Children's Hospitals at least to us. They had  a library, computer area and play area for the kids.  Every single person you interacted with had an amazing positive attitude and truly loved what they did.  They even had a "Toy Lady" bringing around toys, crayons / paper, books etc.

Here is Kylie playing in the Kids Play Area

We arrived at the hospital at 7:45 this morning and left at 3:30.  Kylie was sedated for all three tests done today a MRI, EKG and an ABR (A hearing test where they tests the brain waves while playing noises at various frequencies).   Kylie was a true trooper and the Nurses were fantastic.  Kylie could only be sedated for three hours and she had five minutes left on the watch when we completed the tests.  Unfortunately a hour or so into sedation Kylie started to scream and cry in her sedated state.  This was at the time we were doing the hearing test and they had to stop and start the tests as they can't pick up any noises.  Our nurse pushed the technicians and others hard to make sure we could get everything completed and we did!  

Getting her IV put in and didn't cry at all!

I'm feeling Sleepy

This is Kylie after her hearing test 

(they hadn't removed those wires) and during her EKG.  Sometimes you can over accessorize

Waking up from sedation was not easy as Kylie was super super cranky.  Can you blame her she hadn't had anything to eat or drink since 7pm the night before and she was just sedated for three hours??  After about a hour she started to come around and demanded some apple juice and that is exactly what she received.  Once awake for over an hour we were sent home.

Apple Juice STAT! 

 Grandma let's go!

It was a tremendously stressful day.  Sitting watching your child in the MRI machine is not something I recommend as family bonding time.  However, we are grateful that the doctors are checking everything possible.

We were fortunate to come home and find balloons and ice cream waiting for us.  Our neighbors brought it over to cheer all of us up and nothing does that like ice cream!  Kylie is resting with Grandma on the couch and enjoying Dumbo.

Thanks for sending all your wishes, thoughts and prayers! One Day at a Time!

Our Kylie

Our blog has always been dedicated to Living La Vida Lum and while all the posts have been rather upbeat and fun at times sometimes they aren't as fun! This post would be one of the exceptions.  This post is not made to bring you down or for you to be sad or to look for your sympathy.  It is truly meant to keep you up to date on Living La Vida Lum, Kylie Lum that is. 

So to start from the beginning, well not that far back.  A few months ago Kylie's school approached us at Kylie not being at the same speech level as the other kids in her class.  As parents of only one child, we don't have anything to compare her speech level to.  However, it soon became apparent when we would listen to her in class compared to some others that she would talk and interact but her vocabulary wasn't as expanded as others.  We spent every night for weeks on end working flash cards and asking her to name things and her vocabulary grew but her pronunciation of words did not.  We decided to take her for a speech evaluation and anticipated that she would need some therapy.  What we found out at this initial appointment sent shock waves through our household.

Kylie failed the initial hearing test! We decided to take her for a private evaluation to an Audiologist and see if this state test could possibly be true.  After all,  Kylie could hear us upstairs when we called her and she communicated with us.  This had to be wrong.  After having every hearing test possible performed on Kylie and repeated two times the results were confirmed.  Kylie has severe loss of hearing in her right ear and severe to moderate hearing loss in her left.  To put it in perspective for her to hear the sound level of a jack hammer is the level she can hear normally at.  Everything else she is straining to hear.  What does this all mean?  Where do we go from here? How is Kylie?

Well, Kylie will have to wear hearing aids or some type of hearing instruments for the rest of her life (the hearing aids arrive on Thursday) for both ears.  We are in hopes that she will hear better with the use of the aids.  Kylie has a week full of tests this week to help rule out further complications with hearing loss.  She will have a Seated ABR (Hearing test), an EKG and a MRI.  Add in a dentist appointment and a 3 year old check-up and we will be in the doctor office all week.  We are happy to say that on Friday Kylie passed her vision test which sometimes vision and hearing loss go hand in hand.

With the loss of hearing at the magnitude of Kylie's (she passed the newborn hearing screen), her ENT is leaning towards a diagnosis of progressive hearing loss.  This can mean that she will loose her ability to hear altogether.  Whether this will be in 2 days, 8 weeks, 56 months or 80 years we have no idea.  With the amazing technology out there with cochlear implants etc, hearing aids that are Bluetooth enabled and more studies and all the current research out there we are optimistic about the diagnosis.

We would be lying if we said this was an easy diagnosis for us.  We have been making a lot of lemonade lately.  However, we only see this as a small bump or obstacle in our path in life. There is an old Chinese proverb that says, "Crisis is opportunity."  Now it is up to the Lum family to do something about this opportunity we were given.   Sitting back and being in denial or depression about it is not going to help Kylie at all. 

We can't wait to share the pictures of Kylie with her cute hearing aids on Thursday with everyone. There were thousands of colors and designs to choose from.  We figured no leopard print until she was over 10.  Just saying... 

During this holiday season, give your children and loved one an extra squeeze and enjoy time with your families and loved ones. Consider yourselves all hugged from the Lum family.

The Goofy Lum Family.  Kylie wanted us to roar like lions!

Spa Sunday

While Brian was at Volleyball practice today, Kylie and I enjoyed the spa.  A.K.A Lum bathroom spa.  We took turns at doing each others toes.  I personally love mine! 

Dance Central in "da House"

Kylie loves music and she also loves to dance. Lately we have introduced her to the Xbox Kinect video game system where she has learned to play Dance Central!  A game where you try to copy the moves off the screen and you get points for doing it. So far each time Kylie has played she has scored higher and higher. I guess this is just the beginning of her dance career!

Two Weeks Ago....

Do you know what happened Two Weeks Ago today?  You got it Thanksgiving! Yes, this post is a tad bit late but we wanted to make sure to share our adventures in Texas.  My parents just moved to Texas approximately a week before Thanksgiving.  Brian, Kylie, Shawn, Jeff, Zoe and I flew out to Texas to celebrate Thanksgiving with my parents.  Of course there was Black Friday shopping as well!  This year Texas Style! I have to say the people in Texas are awesome and super friendly!

On Thanksgiving Day we all went to the Gaylord Texan to attend the DreamWorks Experience.  Here we are snow tubing and at the ICE display.  We had to wear parkas as it was FREEZING at the event! 

Kylie and Zoe waiting to get into the ICE

Kylie still waiting

 

Brian and Kylie ready with their parkas 

Kylie and Grandpa with Shrek - All made out of ICE!

As you can tell Kylie loved Snow / Ice Tubing

Kylie loved my parents dogs (Roxie and Maggie).  

Zoe and Kylie took turns walking the dogs and Kylie loved cuddling up with the dogs. 

 Kylie helped Grandma make pizza crust for dinner one night and 

kept given Mom directions to work the dough more

Here is Kylie working on building her Gingerbread House.  Brian finished it and in my opinion went a little overboard. 

 

One of Kylie's favorite things is bath time with my Mom.  They have bubble fights and lots of laughter.  In this occasion Mom didn't realize with the jacuzzi tub on the amount of bubbles that would take over.  We almost lost Kylie!