I'll save you all the horror of beginning at the beginning. Let's just all agree that there was a beginning, and it was long and difficult, but it got us where we are today, so it was worthwhile. Someday, you'll get that information... Perhaps in bits and pieces, perhaps in recap posts... Whatever seems necessary in order to continue our tale. So! Instead of beginning at the beginning, I'm going to begin... yesterday.
It was Ceili's second trip to Shriners Children's Hospital in Sacramento, CA, but our first trip for the Spina Bifida Clinic. She was seen oh, about two months ago?, in the Scoliosis clinic, where they noted a curvature to her spine, but assured me it was not severe enough to qualify as a scoliosis diagnosis. Now, she was being seen, for the first time in her nearly 4 years of life, for her diagnosis of "Closed" Spina Bifida. Unfamiliar with spina bifida? Look it up; it's interesting stuff. I'm not here to pretend to be a doctor or to bore you with information you may already know, so I'm just going to tell you that Ceili has closed spina bifida, and no one has ever deemed it worthy of medical attention until now, so we really never thought much of it.
I drove three and a half hours to get to Shriners, unsure of what was to come. I mean, like I said, no one ever felt her spina bifida was worth paying attention to before, so I had no idea what to expect from this. Would we get any new information about her current health condition? About what could be? ...Or would it be like every visit to every geneticist, where they probe me for information about her incredibly rare condition so they can gather data, but they have no useful knowledge to impart because it's too rare and no one knows anything about it? I went in with spirits high, hoping for new information. I always appreciate when doctors can tell me something I don't know.
I wasn't prepared for what I got. Of course I wasn't. I know by now that no doctor's visit is ever going to bring GOOD news--the best we can ever hope for is no change or no new information. So why is it that I repeatedly let my guard down when we have a doctor's appointment? Why don't I go in expecting the worst so I can be pleasantly surprised and relieved when the news is no news? At the scoliosis clinic just a mere matter of weeks ago, I was told she did not have scoliosis. The first thing that happened at the spina bifida clinic was an x-ray to confirm that she does, in fact, have scoliosis. Scoliosis which was present and apparent in the films taken a few months ago. The very films that allegedly cleared her of this diagnosis.
Now, I'm no doctor, BUT.... Yeah, that sure looks like a huge curve in her spine to me. Mind you, this was the x-ray to confirm the curve seen in the previous films. So they looked at this spine at a SCOLIOSIS CLINIC and couldn't identify it as scoliosis. No harsh words against Shriners (I *LOVE* them and everything they do, I promise), but someone made a boo-boo that day, and while it may have seemed like a minor mistake because all it did was give me peace of mind for a couple of months, that peace of mind followed by the actual diagnosis was earth-shattering for me. Given my current mental health, it sent me into a state of near-crisis. I began pacing the room, I broke out in a sweat, my voice got louder and higher in pitch against my best efforts to control it, and I nearly had to ask for a glass of water just to be able to calm down long enough to process the news.
The rest of the day was fine. Her scoliosis could be an indication that her spinal cord has retethered, a possibility that has existed and that we've been preparing for since her first surgery at the tender age of 6 months. The quote the doc gave me was that 30-40% of tethered cords that are released re-tether with time. If it comes to it, her pediatric neurosurgeon was a godsend, and I'd be perfectly willing to trust him with my daughter's life a second time. Now, thanks to Shriners and their wonderful team, Ceili will be getting regular urology exams and labwork to ensure that her neurological condition isn't having adverse effects on her bladder or kidneys. We got a prescription for a new, custom-fitted wheelchair for her to use for long distances, long days, and for travel. That should be fun and nifty; we like new things when insurance pays for them!
Meanwhile, in the rest of my world, I have an online exam and a paper that both need to be completed by Monday, then one last final on Dec 7 to end my first full semester of grad school. I continue to exist in a state of heightened anxiety, on the verge of crisis, with my darling husband coming to my emotional rescue every night without fail. I'm fighting the insurance company to get approval for my EMDR treatments for the PTSD, and I'm hoping that fight doesn't prolong my suffering. I desperately want to get better.
Fun fact of the night: For a year, I sang in a rock cover band in casinos and bars throughout northern Nevada, California, and Arizona. I quit to go back to school for Early Childhood Special Education. I'm a woman of varied interests. :)
....P.S. I'm still trying to figure out why it looks in the x-ray like my daughter swallowed a quarter. I'm 90% certain she didn't, but what else could that big circle be?!?