We are going to go forward. We must.
The last 36 hours have been a blur of phone calls, and research. If you tried to use Google, and found it to be slow yesterday or today - blame me.
First, we are going to go and see another specialist. This one is a pediatric orthopedics specialist, board-certified. His "regular" practice is down at the state capitol, a two hour drive away (a mere walk in the park compared to the drive to Hospital City) but he is now coming to the Greater Metro Area on our side of the state twice a month - on the second and fourth Fridays. (insert wild applause here) This, by the way, is the doctor that we had wanted to take Twinks to nearly 12 years ago. At the time, he had a two-year waiting list, because he was (and still is) the only board-certified PO in the state.
We are in for next Friday. Didn't I tell you that everything seems to be happening in one-week intervals? Weird.
At any rate, I'm excited about seeing this new doctor. First, it will be WONDERFUL to have a local orthopod we can go see for the "minor" stuff. Don't get me wrong - I will forever be grateful to the Shriners for what they have done for our Twinkie, but 13 trips in 12 months has left me ready to come in off of the road. It will also be good to have a fresh pair of eyes looking at Twinks; someone without preconceived notions of who she is/how she should be. The doctors at Hospital City have truly watched her grow up; they know that she would have never walked without the surgery, the treatment, the PT, the braces that we have gotten there. She is a great success story to them... and while it is truly a blessing for us, I worry sometimes that they are so pleased with her "success" that they fail to fully see and understand her pain and weakness. I think that maybe sometimes all they can see is the sweet, sunny little girl clutching a handful of smiley face pins who has a hug for everyone she sees.
Ironically enough, I now realize that in many ways we have been spoiled by the Shriners Hospital. No waiting for the insurance company to decide what is or isn't covered; to tell us which hospital, which specialist, which procedure will be "allowable". We have the films from the MRI, and we are still considering sending them south to see what the doctors at Hospital City make of them. We are definitely taking them with us to the PO next Friday.
I'm still so relieved that it isn't tethered cord. Oh God, I am so relieved. The dark, abject terror that was filling my soul has begun to recede, but there is still a void.
The void is the absence of knowledge. I want a diagnosis, dammit. I want to know what is going on. I want to know if it will get worse, or get better. I want to know if surgery will be required. I want to know if her pain can be controlled - through orthotics or drugs or surgery. I want to know what this is. The enemy unknown truly is more frightening...
Our Twinkie is still in a great amount of pain (from the hips down) and her legs are weak (she says they feel like they are full of jelly) In the last 10 days or so, her lower back has started hurting badly also. Everything seemed to point towards tethered cord. The symptoms fit, the timeline was right. As much as I had hated the idea, tethered cord made sense. To everyone.
The neuro's office called this afternoon; they have already gotten the insurance company to OK the PT that he wants her to do. Fine. The therapist will call later to schedule Twinks. Fine. Thank you. Have a great weekend.
I feel like a terrible mother, because inside my head, I'm screaming at the receptionist that PT IS NOT THE ANSWER.
I feel like a terrible mother, because I should have followed my instincts, and put my foot down months ago, and not budged until someone REALLY LISTENED to Twinks about what was going on with her.
I feel like a terrible mother because there is something wrong with our child, and I can't seem to find out or figure out what it is.
I love this child so much. With all of my heart, with every fiber of my being. I would take her pain - if only I could! - I would take all of the pain for her in a heartbeat. I would give everything I own, now and forever, if it would mean she would never hurt. I would give my very life for hers, if only somehow she could be healed of whatever this is.
I hate that she is now a "medical mystery". I feel like we're part of one of those True Life Dramas® in Reader's Digest. The problem is, we are still waiting for the last part of the story to be written. My fear is that it may be a long time before that happens.
So for now, we keep putting one foot in front of the other. Literally, and figuratively. Until we arrive at the answer.