It's all about the heart

When Kylie was much younger she was diagnosed with First Degree A-V Blockage of her heart.  Kylie meets the criteria for this by about by 1 digit. Her cardiologist believes she will grow out of it as she gets older.  However, with this diagnosis she has to have medical clearance for her upcoming CI surgery from her cardiologist.  So, this afternoon we were off to Joe DiMaggio Children’s hospital to  visit her pediatric cardiologist for a few tests.

Kylie is no stranger to this hospital as she has had numerous tests and even has spent some time here as well.  I can’t say enough how AMAZING the staff is here and they cater everything to the children.  Of course today was no exception!  What is awesome is the nurses and doctors remember Kylie from her various visits and make her feel right at home.  Stickers, Snacks and TV oh my!

Today Kylie went in for an EKG and to have a halter monitor put on for a 24 hour review of her heart.  She took everything like a champ and smiled along the way.  Now we record her activities, playing, sleeping etc. and get to overnight the monitor back! 

Just another step closer to her surgery!  We are so excited.  How fitting for her heart to be getting a check on the eve of the largest heart day of the year.  Happy Valentine’s from our cutie!

Kylie waiting for the tests with some apple juice and a little TV

I'm so happy! 

 Heart Rate Monitor going on... 

Heart Rate Monitor from 2012

Kylie and Grandma being silly

Kylie seeing the Joe DiMaggio Dog - Nutmeg (they go way back!)

Nutmeg and Kylie 2012

Smiley Kylie Update

WOW!  Time really is flying, it seems like just yesterday we were writing about Kylie’s first steps, first tooth etc.  We have been bad at updating the blog especially in the days of so many different social media options.  We really enjoy the blog and hope you do as well as we use it quite often as a reference point on when things occurred.

Kylie is doing well in school and in many areas is at grade level or beyond.  She struggles still as it relates to speech, reading and vocabulary, all of course related to be diagnosed as deaf and hard of hearing.  However, the progress she is making is phenomenal.  The panel of experts, teachers, and friends that work daily with Kylie makes a huge difference.  People have shared how much more vocal Kylie is versus 6 months ago and how she wants to have a say in everything (I swear I don’t know where she gets that from).  Being deaf and hard of hearing is not something that will ever go away but something we can continue to work with and develop new strategies, she is no different than you or I.  Except that she can  with her “princess ears” she can take a phone call in her head.  Not many people can say they can Bluetooth their phone, iPad etc. straight into their head.  While that is cool it is also freaky!

While Kylie has improved greatly from her cochlear implant (CI) and one hearing aid, it still doesn’t provide Kylie 100% access to the sounds needed to be able to communicate and understand words and language.  As mentioned prior Kylie was approved for a second CI, which will bring Kylie to a level of “perfect hearing.”  This doesn’t mean when she is activated that the next day she will say spider and include the s that she has been omitting for all these years.  This means the work begins in teaching and pushing and educating Kylie as she will have access to these sounds she hasn’t fully had in the past.  This isn’t a light bulb that you turn on and turn off.  This provides you access to these sounds but now how do you utilize them how do you produce them etc.??  For someone who has never said spider as it is supposed to be said but says it as pider correcting that is the challenge.  Of course, we have never faced a challenge and not taken it on full throttle.  That’s not how the Lum/Straub’s are wired to operate.    

Kylie’s surgery is scheduled for March 13^th here in Miami with the same doctor and team that she had for the first surgery.  As any parents would be we are worried and concerned about the surgery but excited about what comes after.  Although the surgery is slated for March 13^th, the activation, meaning when they turn on the CI won’t come until April 16^th.  If Kylie recovers faster from the surgery it may move up to be sooner.

The next few months are going to be filled with so many exciting times for the Lum family and we will keep you informed along the way.  We greatly appreciate your support, thoughts and prayers and we count our blessings every day.  Kylie doesn’t see herself any different than anyone else and there is NO CHALELNGE that she isn’t willing to face head on and succeed in.  Some may call that stubborn (again not sure where she gets that from), I call it a strong will to succeed.  I don’t know what her future brings, will she be a doctor, a lawyer, a vet, a teacher, who knows, what I do know is she will succeed and be a mentor to others with hearing disabilities.   She will always be SMILEY KYLIE! 

Catch up

WOW it has been a long time and we haven't done a blog update.  Here are some pictures we found on the camera :)

Merry Christmas to all and a very Happy New Year! 

Playing in the bounce house with Grandma

Carving Pumpkins... I told you these pictures were old!!

 

 Holiday Cruise on Liberty of the Seas

The night before Christmas

Kylie and her money necklace...

Harry the Dirty Dog

Yesterday, Kylie attended a field trip to see a play (based on a children's book) titled, Harry the Dirty Dog! Looks like Smiley Kylie had a total BLAST! (Her Teacher sent us all the pictures)

Surprise....

Two weekends ago, I had a work event Friday - Sunday in Orlando, Florida.  As the week went on I was sad thinking that I was going to be away for the weekend until it hit me.  I was going to be in Orlando and what better trip to bring Brian and Kylie along.  After discussing Brian and I decided to surprise Kylie.  So on Friday after school with the car packed up we picked up Kylie and off we went to Orlando.  

Brian gave her a letter that told her since she had been good he was going to take her to Disney World.  It took a second to kick in after he read it to her she simply said, "Oh Okay!"  After that she screamed realizing that it was really happening.

While I worked on Saturday with my travel partner friends, Brian and Kylie went to Disney World.  They left the hotel at 7:45a.m. and returned right after 10:00p.m.  Kylie and Brian had a blast from what they told me.  Just one little snafu, while Brian took the camera he forgot to take the battery out of the charger, so there were no pictures of the day.  Thankfully Brian's friend Derek and his wife Leilah met them at Disney for a few hours and took some pictures!  

What a great weekend! Pure JOY in these pictures

Walk to School

Recently Kylie's school, Park Springs Elementary had their Walk to School morning.  It was so refreshing to see everyone out walking their kids to school.  The police even were there to lead the kids to school.  I honestly would do it more often if I had more time in the morning to get home and shower and change for work.  Kylie really enjoyed the day! 

The Walking School Bus Meets Here (The car in the background was the crossing guard)

Kylie and I ready for the walk

Kylie and our neighbor/friend Frankie

Part of the crowd that met at the corner

The Principal and Police Officer ready to lead the group down the street 

Kylie turns 6!

I remember clear as day the moment I went into labor with Kylie, the first birthday party, the second, third (okay you get the picture)... Now she turned 6.  Everyone tells you when you have a baby that time will fly by in no time and they aren't kidding.  How is this little girl already 6 years old?  I swear I am going to learn how the big button on my remote will pause life as I am afraid I am going to miss something.  

We were fortunate that Gung Gung and Po Po and Grandpa and Grandma could come and join us for Kylie's birthday.  Plus, for Kylie's birthday there was no school on a Thursday.  Somehow weeks prior Kylie convinced Grandpa that he would take her to Chuck E Cheese and buy her twenty dollars worth of tokens.  So of course he kept his promise and with a coupon for extra tokens (thanks Brian) we all set out to play game after game at Chuck E Cheese.  I will go on record saying this is one of my least favorite places and never fear I won't be having my birthday party here.  We finished the birthday with cake and presents.  

Kylie and Mommy Playing a game at Chuck E Cheese with Gung Gung watching

Kylie showing Gung Gung her tickets

Grandpa playing Wack a Mole game.  Po Po got the highest score as all of us took turns

Grandpa and Kylie playing Skeeball.  Grandpa got the highest score here too!  (I think he lives at Chuck E Cheese)

Kylie's new game from Po Po and Gung Gung - Donkey Kong Country

Kylie's new fishing rod.  She was so so excited! 

Kylie's Birthday Cake - Ninja Turtles

She wanted the piece with her name on it.  (No worries she didn't eat the whole thing)

Of course we had to test out the new fishing pole and each one of us had our own pole to catch a fish.  No fish were caught on this day.

Kylie is in love with two things, FROZEN and Ninja Turtles.  If they could be combined she would be thrilled!!

Dunkin Donuts had Ninja Turtle Donuts!! 

Kylie received some Ninja Turtles for her birthday! 

For Kylie's Birthday party she wanted her friends to join her for some bowling fun.  It was IncrediBOWL and we had a lot of fun.  Kylie had 20 friends join us for a fun birthday party!!

Kylie and Kateyln

Kylie and Aiden - they have been friends since 18 months

Kylie and Tatum - SO CUTE!!!

The party Congo Line

Time for more cake!!!