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 13th 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 13th,
the activation, meaning when they turn on the CI won’t come until April 16th. 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!
