Moving at the speed of pain

We got home late late late Tuesday evening from Hospital City.

To say that things did not go as I had hoped would be a gross understatement.

The routine of the trip lulled both Twinks and I into a false sense of comfort. All the way down to Hospital City, whenever she hurt, whenever she thought she couldn't take another step, I would remind her that we were just hours away from seeing The Doctor. We both thought that he would have the answer to what was happening. He could explain the weakness in her legs that robs of the ability to walk further than a few steps. He would tell us why she is getting dizzy. He would know what to do about the fatigue, and most of all, the pain that never ends.

But he didn't.

Instead, he told us to go home and find a pediatric neurologist. No further explanation; there was not time. The Clinic was full, and he was literally being pulled in two directions at once by staff members. The Care Coordinators who came into the exam room to counsel us wore expressions of concern that seemed to me to be touched with pity. They made sure that I had all the necessary information, and then they left the room. We went back to the Clinic Waiting Rooms to listen for the page to Orthotics & Prosthetics. Big J checked over Twinks braces, making sure that they fit properly, that no repairs were needed. He made an adjustment, and made Twinks laugh and smile, and then we were... done.

We went to The Mall that is just down the street, and around the corner from The Hospital. We had a light snack, and tried to walk around a bit. We didn't get far; even going to the music store didn't last long. She limped out to the parking lot, and The Twinkie had fallen asleep before we even made the outskirts of Hospital City.

Once again, I found myself alone with my thoughts as I drove us home. I was not in the mood for the light jazz that I usually listen to; I didn't even bother jacking in the MP3 player. There was nothing on the radio, either - nothing fit my mood.

So, I turned everything over in my mind. Time and time again, I tried to make these pieces of the puzzle fit - to make sense of everything. Why a neurologist? What could The Doctor be thinking? Why wouldn't he at least tell us what prompted his recommendation? What could be causing these symptoms?

Naturally, as soon as I got home, I began to search The Internet for answers. When The Wrench arrived home from work, he joined in, and we kept our little home network buzzing, sending links back and forth, while we tried to figure out what could be going on. What we found left us with more questions than answers.

On Wednesday, I located a Pediatric Neurologist, and made an appointment for the first opening he had available. The PN is in The Greater Metro area, so we will drive about 20 minutes to get there, instead of 8 or 9 hours. We also had a bit of good news in the form of the Pediatric Orthopedist, who comes to The Greater Metro now twice a month, from The State Capital. The PO has been there all along, but when The Twinkie was born, his practice was closed to new patients, because he is the only board-certified PO in the state, he is typically overwhelmed. The Twinkie will now have a PO here at home that we can see, instead of driving 400 miles for a doctors appointment. The local PO can coordinate care with The Hospital; if it saves us even one trip a year, it will be well worth it. We have an appointment with him in February. It is just as well, for as of this writing, she would not be able to make the trip to Hospital City and back again.

Since Tuesday last, The Twinkie has continued to deteriorate. She has not been to school at all, and her symptoms seem to be getting worse. The Wrench scoops her up, and carries her around the house, to the minivan, from here to there, his strong arms temporarily supplanting her need for the wheelchair or walker.

I realize that tomorrow we likely won't be much closer to actual answers about what is going on. I know that tests will have to be performed, then the results analyzed. I know that it may take time to figure out what is going on with our sweet little girl. I understand that it may involve more than one "discipline"; that indeed, we may have several specialists before the final chapter is written.

Until then, we move at the speed of pain.