Watch Out She's on Two Wheels

For the past few weeks, every time we go outside I encourage Kylie to ride her bike without training wheels.  I have had one of those sticks in my Amazon cart for the last couple of weeks but I have been so busy I didn't order it.

Today, when we went outside to play, I said let's give your bike a ride.  She reluctantly got on the bike and started to pedal and then said, "Mom I've got this," and started riding her bike like she had been for a few days.

She was so excited I had to go in and get Po Po to see it and Po Po was nervous so she ran alongside her.

Next she wanted to ride around our circle street for which we did fine.  

Lastly, she wanted to show Gung Gung that she could do this easily.  

She can't wait to show Brian tomorrow and I bet she will hardly sleep. (He's at a volleyball tournament today)

I am so proud of her!  Oddly she is somewhat stubborn and she insisted that she could do this! (I have NO IDEA where she gets that from)

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!