The Rest of the Story

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.