Sorry for the long vacation from blogging - more on why in another blog post perhaps.
But first, let's talk about Emma. In fact, that is one of her favorite phrases these days. When she's in a good mood and/or stalling us, she leans in to our faces and says, "Let's talk."
Medically, she did a great job with a bladder capacity test at Shriner's. Her bladder held A LOT more this time, which we hope will make things easier for her in the future. She also had a clear kidney ultrasound.
On a really, really horrible note, she has scoliosis. I can't remember the degree of curvature because I was trying to soak in all the information being thrown at me in a very small period of time. She will have to wear a back brace under her clothes as much as possible "until she stops growing." This is the part that really did me in. Because life isn't hard enough for her. And life is incredibly hard for children who are different IN MIDDLE SCHOOL. Ugh.
The orthopedist wasn't all that forthcoming with information, so my knowledge of what will happen is limited to the questions I was able to put together in about 2 minutes of 2 orthopedists sitting there staring at me. (Insert about a million frustrated emoticons here.) The brace will be made of the same hard plastic material that her AFO's are made of, and it will wrap all the way around her torso. If anyone has any tips on how to get a three-year-old to tolerate this particular form of torture, I'm all ears.
On a positive but scary note, I walked by Dr. Troup on the way to make the appointment to have the back brace cast and mentioned what my destination was...and his response stopped me in my tracks. Here's how the conversation went:
Troup: See you next time!
Me: Yep. Going to get an appointment to cast Emma's back brace for her rapid development of scoliosis.
Troup (as he puts down his phone, turns to face me, and put his hand on his forehead): I can almost guarantee you it's the syrinx. We've got to do something about that.
(
Side note: Troup hasn't looked at Emma's MRI since last January, but he remembers the giant fluid-filled cyst on her spine. We have been looking for symptoms of this cyst because he can't believe there are none...well, there WERE none.)
Me: You think so?
Troup: I know so. When do you come back?
Me: I don't see you again until next summer.
Troup: No, to evaluate the progress of the back brace.
Me: We haven't gotten that far. Do I need to make an appointment with you?
Troup: No, wait and see how the back brace does. But it's the syrinx. We've got to do something about that.
Again, not enough time for me to process everything. So after I DID have time to process later that day and after talking to Emma's retired Shriner's nurse who knows everything there is to know about spina bifida, I focused on the sentence that Troup said twice:
"We've got to do something about that." Through the wonderful and dangerous world of internet searches, I am more convinced that Troup and the ortho need to talk. The ortho doesn't know about the syrinx. If Emma needs to have this major surgery to have the syrinx drained, I would rather talk about that now than wait for the scoliosis to get worse even with the brace just because I didn't go with my gut. So here I am, waiting to hear back from Troup about what to do next.
As if that day wasn't a huge Debbie Downer to start with, it was the anniversary of the worst day of my life so far: 4 years ago to the day, we were in a dark ultrasound room hearing a doctor say, "I'm so sorry to tell you this, but your daughter has spina bifida." This scoliosis news brought back some very fresh feelings of that first horrible day - feelings of sorrow for Emma's future, fear of many, many potentially dangerous surgeries, and the most intense feeling of all: dread. Dreading days that Emma will come home feeling excluded, ostracized, bullied, pitied, ignored, and ugly.
Then we fast forward one short day, and I get the news that Emma had trouble lifting one of her legs at therapy. Ding ding ding. That mysteriously asymptomatic syrinx may be rearing its ugly head.
Well that was a lot of depressing information, so why don't we all crawl in bed and pull the covers over our heads now? I will get back in the swing of blogging, I promise. I will always make sure Emma knows how loved she is and how much people want to know about her.
Let's not end the blog on a bad note, actually...here are some pictures of our doodlebug.
