Lexi's Journal about Deep Brain Stimulation for Kernicterus
(background info is at the link below)
Lexi has a neurological condition called kernicterus as a result of very high bilirubin (jaundice) in the days and weeks after her birth almost 7 years ago. She is extremely smart but can't yet sit up, walk, talk, or hold anything in her hands unaided. We are pursuing deep brain stimulation (DBS) at the Medical College of Virginia in Richmond. If she turns out to be a candidate for the operation, Lexi will be the first child with kernicterus to have this procedure. Since it is experimental for her condition we have no idea what to expect from the surgery including what benefits we may see. We are keeping this diary to keep friends, family, and other families with children with this condition informed about Lexi and the trials and tribulations surrounding DBS for children with neurological conditions.
By the time you are reading this, we
will be home and, hopefully, Lexi will be pain-free. Today, however, I am holed
up in a hotel room at the Newark airport, watching her as she grimaces on the
bed, a pillow wedged between her very bruised legs and her little body jittery
from the discomfort of what was supposed to be a minor surgery. Seeing my child
in pain—for lack of any classier word—sucks. Knowing I chose this for her in
hopes of a little better function sucks even more.
All of this brings me back to a few
years ago when I sat her down for a heartbreaking discussion. It came to our
attention that despite the fact that we had talked about her condition with
doctors, family, and friends, that we had never had a frank discussion with her about what had happened and what her
future was likely to hold. I know it seems obvious that a girl as bright as Lexi
would certainly have put two and two together, but it was equally possible that
a girl as imaginative as Lexi could have talked herself into all sorts of scenarios
where everyone had to go through what
she did in order to walk and talk and that just maybe she had not witnessed
that process for everyone else. So we sat down and had that talk. I told her what
had happened to her and that most things that the rest of the world takes for
granted would be harder for her, but that as long as she was willing to do what
it takes to figure out how to do these things that we, her family, would hold her
hand and walk every step of that path with her. At the end of that talk she was
crying, and I knew that the reality she dreaded had run headlong into the
fantasy she was nurturing. And of course there I was, watching my child in
pain, a different kind of pain, but a pain that is more horrible than a parent
can imagine putting their child through. There was never talk that day, nor any
day since about the possibility that Lexi wouldn’t
get better, that no matter how hard we try that she still might not be able to
walk or talk or function in any meaningful way.
Since then we have spent every day
working towards Lexi’s best possible outcome. I won’t lie; the pursuit has been
financially overwhelming and has meant that the other kids in our family have
had to go without both material things and our time, but the hardest part of
all has been times like this, when we have obviously put her in physical pain.
That is torture for me.
At our worst moments, however, it
seems like there is always something that pulls me out of my funk. This time it
was a visit with a little boy named Aidan, and the week before a little girl
named Lali. Two tiny little miracles who survived their bout with newborn
jaundice and have kernicterus and all its associated problems to show for it:
Cortical vision impairment (a form of blindness); auditory neuropathy (a form
of deafness); and horrific movement disorders like Lexi. Yet still smiling,
happy, bright children. Aidan and Lali remind me what we are fighting for, that
these children deserve as many people as possible actively pursuing ways to make their
futures brighter. And they also remind me of what I am thankful for. I thank God
every day that Lexi can see and hear, and I hope I never lose sight of what she
does have in pursuit of what she doesn’t.
So here is a list--not nearly in its
entirety--of things I am thankful for: First and foremost I am thankful for my bright brave, and ridiculously silly girl Lexi who still wakes up every day with a smile. I am also thankful for amazing doctors, therapists and friends. For her
extended family, especially her awesome daddy, four siblings and brother-in-law that would do
anything—and I mean anything—for her. For her French class and teacher and
their desire to see her participate. For Mitey Riders Adaptive Horseback Riding
and Harry and all the amazing people there who give her a normal child
experience every week. For Todd and Elizabeth at the Charlotte Observer, as
well as Amy Jo Johnson, Jaclyn Salamone, Macy Kate, Andrew Lane, Dani Thompson,
Davis Cleveland, and the rest of her Hollywood friends, all of whom have helped
share her story and raise awareness. For Celeste at Assistive Technology who won't give up until Lexi can communicate. For Dublin Dogs and the Paws4People Foundation
who are working on getting Lexi her own furry helper/friend. For friends, acquaintances and even total strangers who have donated to her medical fund. For all of you who
have followed her on Caringbridge, Facebook, and Twitter for cheering for her
through ups and downs.
I could go on and on, because in Lexi’s
life, amazing, invested people have shown up to walk this walk with our family,
so that it feels like our family is walking down this path holding Lexi’s hand,
with a crowd of thousands behind us. And that really helps take the sting out
of days like today.
I hope you all have an amazing holiday
season no matter what your faith may be.
Love to you all.
Ken, Susan, Lexi and the rest of the Haas family.
PS. I wrote this on Wednesday and am posting Thursday.
Today, Lexi is feeling much better and while she is still having a hard time
managing the pain in her right leg, we are already beginning to see her tight
muscles loosen up a lot and are confident that this will be successful!