Sunday, August 25, 2013

The frustrations of spina bifida

Last month, Anna recovered from a bladder infection and began taking a daily antibiotic to prevent another infection.  We were cruising along in a somewhat "back to normal" manner, with a few hiccups here and there, but for the most part it was what spina bifida normally is to us.  A few weeks ago, we met my niece at a local park so I could take pictures of her twins.  My girls simply adore babies and toddlers, especially their cousins, so it was decided that they would tag along and hang out at the playground with Rich while I photographed the twins.  We even brought some stuffed animal puppets so the girls could assist if needed.

The photography session was moving along as well as a photography session with two 19 month olds can move along.  My girls were simply hysterically with the little ones.  They'd say things such as, "Oh no, sweetie, come back here," when the twins took off running in another direction.  We brought snacks for the girls but Anna didn't want her snack or anything to drink.  And then she told us that her tummy hurt.  Whenever she complains of a stomachache, I ask, "Do you feel like you're going to throw up or is it a poop hurt?"  The majority of the time, it's a poop hurt.

I can't really explain what "poop hurt" is but I'm imagining it's similar to gas pain.  When she feels crummy like this, I usually end up in her bed with her at night.  She doesn't sleep well so I don't sleep well.  Poop hurt can last for an hour or it can last for a day.  It's frustrating because there's only so much we can do to make her feel better.

So on this particular day, instead of my child enjoying herself on the playground, she sat on a bench watching the other kids.

I went over to try to cheer her up but it was more than obvious that something wasn't right. The whole thing seemed odd because she had been fine when we first arrived.  We had wrapped up the photo shoot by that point and the kids were all just playing.  Well, all of them except for Anna.  We left and when we returned home, I cathed her.  There wasn't much urine and it was cloudy.  My first thought was, You have to be kidding me.  Another infection?  I took her temperature.  No fever at all.  Rich, who had cathed her before we left for the park, insisted that her urine had been clear.  AND she had been taking a daily antibiotic that was supposed to prevent this type of infection.

So here we are, on a weekend, not knowing what the hell is going on with our kid.  I hesitated on rushing her to the ER because the last thing she needed was an unnecessary ER trip.  We suspected that in addition to having some GI discomfort, she was dehydrated, which may have been caused by her medications, so we began pushing fluids on her.  Drink, drink, drink.  The next morning was a bit shaky but then she ate a good lunch, her urine began to look better and she perked up.  Two days later, she was completely back to normal.

I don't like these unknowns.  It's frustrating.  It's unnerving.  And sometimes it just seems so unfair.

When the girls were measured at their six year pediatrician appointment, Anna was visibly shorter than Allie and Emily.  I recently noticed that she's grown so much she's closed that gap.  She may still be a tiny bit shorter but it's no longer obvious.  Her legs look longer making her skirts look like they've shrunk.  Even her urologist, who only sees her twice a year, pointed out her growth during her appointment last month.  "She's growing," he said, waving his hand in front of her. "That's good.  That's very good."  Growth means she's healthy and we need for her to stay that way.

4 comments:

Kara said...

Dealing with that many unknowns about your kid's health takes a huge amount of emotional strength. They have lucky to have a strong mom like you!

Sarah said...

Thanks, Kara.

Anonymous said...

I agree, it is unfair. Stay strong, momma.

Mama Meerkat said...

I hope Anna stays feeling better! Earlier this year my daughter who has spina bifida had 5 UTIs back to back even with prophylactic antibiotics. It was really hard on her.