Doctors

One of my biggest fears about moving was leaving Sarah's doctors and her physical therapist.  In fact, I was more sad about leaving the therapist than the doctors, because she had been working with Sarah since she was five months old and knew her better than any doctor.  She watched Sarah's progress from the very beginning and taught her how to roll over, sit up, crawl, walk, run, ride and bike and everything in between.  As for our doctors, we had quite a few and had built up a pretty good rapport with them as well.  I was struggling with the thought of getting a new cardiologist, neurologist, neurosurgeon, urologist, gastroenterologist, and pediatrician.  Sarah is so tired of telling her story, and I am tired of people not knowing exactly what to do for her.  Her urologist used to call her his "mystery patient", which he thought was great because it was a challenge but from the patient's perspective you never want to be a mystery.

I used to tell Charlie that due to all the doctors, we couldn't move unless he was really sure or unless wherever we were moving had fantastic doctors.  Luckily, that was the case with Denver.  Children's Hospital Colorado, which has a branch right in our town but the main campus is also less than 30 minutes away, is an amazing hospital and ranks higher in every single specialty than the places we were going in Dallas.  I think in 2012 it ranked 6th in children's hospital across the country.  I didn't know exactly where to start, but Sarah's therapist told me to call the NICU at the hospital and ask them who they would recommend.  She is so smart, I really miss her.

I called the NICU, but they referred me to a special branch of the hospital where you tell them what you are looking for in a provider and they recommend someone for you that fits your needs.  Awesome.  They referred us to a fabulous pediatrician that is minutes from our house, who was able to refer us to several amazing specialists.  I was so happy when we left that pediatricians office, she was so receptive to Sarah's needs and really put her at ease.

She sent us to the Rehab department at Children's Colorado where we met an amazing doctor.  For the first time ever, I spoke with someone who understood what was going on with Sarah and even asked spot on questions about side effects and symptoms.  Nothing I said was a surprise to him and he correctly asked me about things that I had forgotten to tell him.  He knew exactly what was going on with her.  It was one of those "everything happens for a reason" moments where I realized why we had really come to Colorado.

With every doctor we had seen in the past, they had no idea what was wrong with her or what had happened.  Her therapist knew far more than the doctors, who often told us there really wasn't anything they could do for her and insinuated that we should just be happy that she could walk.  We saw specialists at Scottish Rite, at Shriners and all over Dallas and Fort Worth.  This was the first person in six years that knew exactly what her diagnosis and issues were.  Even better, he said that they see about 600 kids from around the country every year with the same problems.  They had a weekly Spinal Defect Clinic where all the doctors and specialists come together for about a four hour period and spend time with the kids.  That way you don't have to go to multiple appointments with multiple doctors, they all come to you.

Sarah is scheduled for the clinic in November.  I am so excited to see how it goes and find out what they recommend.  I'm not expecting anything ground breaking, but hoping we can get a better idea of what the possibilities are for the future.  In the meantime, she starts physical therapy in a couple of weeks and she's going to get fitted for new braces next week.

On we go!