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!