Think of everything you heard or read today. We are
incessantly bombarded with information – 99.9% that is meaningless because it
has no actual bearing on our lives. Then, there is the .1% that forever changes
things.
In early October of 2012 when Claire was admitted to LSUS
for initial medical testing, I was handed a note scrawled in black pen that
Claire’s brain had atrophied. The case manager had no explanation other than a
brief sorry that she had no details and the doctors were at lunch. As I sobbed
and stumbled through the hospital looking for someone who could help me, I
managed to find Claire’s geneticist. When I asked her what the news meant, she
replied, “Some kids with atrophy do ok, and others do not.” Then, she turned
through a doorway without a second look back.
It was after that experience that Patrick and I swore we
would never settle for sub-par medical care. Claire has now been to nine
hospitals, so we know a good doctor when we find one – Praise God – the stars
have aligned, and we have found the right specialist at the right time.
No, you haven’t missed an announcement – we still have no
answer as to what Claire’s underlying genetic condition actually is. Patrick,
myself, Luke, and Claire have all undergone every genetic test possible, and
there is no answer. Our goal is to treat symptoms as they present themselves –
we do annual MRIs to monitor her microcephaly (small brain size), she is in
PT/OT and wears leg braces to help with the hypotonia (low tone), she is
monitored frequently by opthamology to track her optic nerve hypoplasia (small
optic nerve), GI/nutrition are on speed-dial to address her weight loss/GI
issues, and now we’re in the VIP club where we get the orthopedic surgeon’s
personal cell phone number.
We have always known that her back wasn’t growing correctly;
however, we didn’t quite know the severity. After a few experiences with
orthopedic surgeons brushing us off, we insisted for a second opinion off base.
Claire was finally seen on Friday, and it was a day where the .1% of information
changed things.
Claire’s scoliosis has worsened to the point that her spine
is curved 48 degrees. Due to her underlying condition, the doctor believes that
she is going to need a spinal fusion surgery around the age of 10 to
permanently correct the issue. For now until she is old enough for surgery,
Claire will be in a cast or a brace that covers her from the shoulders to her
hips to prevent the curve from worsening (I wasn’t a math major in college, but
if I count my fingers correctly, that is not just around the corner). As the
doctor says, “We are just treading water while we try to buy time (until the
spinal fusion). If the casting is ineffective, then she will have metal rods
(growth plates) inserted in her spine. The bad news about that is that those
have to be redone every 6-12 months as the child grows until the final spinal
fusion surgery. The double bad news is that the doctor says casting typically
isn’t as effective on children with an underlying genetic condition. Clearly,
this doctor hasn’t known Claire Godinez for very long! She is a stubborn little
pain in the rear who doesn’t really care what scientific research says.
I think it is safe to say that this isn’t our first rodeo
with getting shocking medical news; however, getting Claire to the best doctor
possible made Friday as opposite as possible from our experiences at LSUS. When
Dr. Faust walked into our room, he looked me in the eyes, shook my hand, and
said, “I know it is 5:30 and your appointment was at 2:30, but I have had one
complicated case after another, and your daughter is no exception. I’m not
leaving this room until I answer each and every one of your questions.” Hello new BFF. After a very tear-filled
appointment, he called me at 8:00 PM that evening to check in on me since he
knew I was by myself and that was a lot of information to absorb. We’re never leaving San Antonio.
So, today Claire got her first cast. It’s a two hour
procedure that has to be done while she is sedated since so much “adjusting” is
required. Everyone’s prayers have paid off – she stayed happy as could be the
entire day (once the anesthesia wore off – she hates that feeling) and the
doctor has her spine positioned so that the curve is less than 20 degrees. When
we were discharged, the nurses didn’t say “See you later”, but rather it was “See
you for the next cast!” This was the first of who knows how many, but at least
we have our new BFF leading the way.
