Sunday, October 15, 2017

The Other Side of Spina Bifida

A sincere thank you to those who shared their stories and those who left kind comments last week.  No one should walk this road alone.

***

Rich, Anna and I made the trek into Boston last week for Anna's bi-annual urology appointment.  This consists of an ultrasound of her kidneys and bladder to ensure proper growth and a general check.  We always say and act as if these appointments aren't a big deal, but if they weren't a big deal, she wouldn't have one every six months.

After the infection Anna experienced this summer, I was slightly nervous something negative would show on the ultrasound, or her urologist would question why we hadn't had her urine tested sooner.  Fortunately, the ultrasound results were good and her urologist reported that they were able to see the correction of the kidney reflux still in place.

Anna's urologist always compliments (I guess that's the right word, I can't think of another to describe it) us on our care of Anna and her needs.  She has had very few infections and because she's remained healthy, the kidney reflux correction has continued to work as it should.  When we left the appointment, Rich commented to me on how we don't do anything special.  And he's right.  We do the best we can in caring for her, but we're certainly not perfect.

10.15a

Anna's been taking a daily preventative dose of antibiotics for many years now.  Rich and I weren't exactly fans of this but because she had kidney reflux and is prone to infections via cathing, we didn't fight it.  Now that the reflux is gone, we asked if she could stop taking these antibiotics.  Her urologist agreed to give it a try.

The ultrasound appointment was scheduled for 1:15 with the urologist follow up at 3:15.  The girls had ballet that afternoon beginning at 4:15.  The past few appointments, I've gone directly to the urologist's office after the ultrasound and they've chatted with us well before the scheduled appointment time.  I thought for sure we would be able to get Anna back in time for most of her ballet class.  We even brought her dance bag and dance clothes with us so she could change in the car.  Yeah, didn't happen.  We've heard that Anna's urologist is reducing his patient load in anticipation of retirement but there were several patients ahead of us.  We left the building at 3:11 and traffic was horrendous, as usual, so Anna was only able to make the last 15 minutes of class, which is when they learn and practice their dance for the recital.  Now that she's on a competition team, she has to have good attendance in all of her classes.  The studio knows why she was late and (I hope) appreciate the effort we made to get her there.

Let's talk about that competition team for a minute.  When I received the email inviting all three of the girls to this new competition team, my heart almost burst.  I was so happy and proud of all my girls. Being invited to a team is a big deal and not something that's handed out just because your sister is invited.  I was told this specifically.  Anna, you earned that invitation all on your own!

10.15b

(The photos I've included in this post are older, from my Spina Bifida project.)

4 comments:

Bree at Clarity Defined said...

Glad to hear she's doing so well and hope everything goes well with stopping the antibiotics.

Also, I think it's great that your studio made it clear that each invitation was based on the dancer herself and not who she was friends or siblings with.

I remember being bummed when my sister was first invited to the company at our studio and I was not, but also being so proud of her because she was an incredible dancer.

Anonymous said...

that's awesome! way to go Anna!

Meg said...

I'm super behind on reading your blog but I had a question. As someone with a chronic illness myself, I'm curious about Anna's involvement in her own care as she grows older. I'm not sure how cathing works but is it something she can perform on herself? Can she do that or has she expressed interest in learning?

Sarah said...

Hi Meg - Yes, at some point Anna will be able to cath herself. Kids with SB begin self-cathing at different ages. There are some kids her age who do it themselves. We're not quite there but slowly working on it.