Wednesday, July 21, 2010

When your child has Spina Bifida

  1. You make sure that you skip over the line in the potty training book that states that diapers are only for babies.

  2. You have to make sure you stick to the cathing schedule.

  3. You have to make sure that your child doesn't miss a dose of medication.

  4. You are constantly watching out for signs of a shunt malfunction.

  5. You are constantly watching out for signs of a urinary tract/bladder/kidney infection.

Em and Allie have been Pull-Up free for quite some time now. They basically became overnight potty trained at the same time they became day time potty trained. We had them wearing Pull-Ups at night "just in case." After a few months with only two or three wet Pull-ups (Allie being lazy), we decided to pull the plug on the Pull-Ups for several reasons.

  1. The cost

  2. To be green

  3. I didn't want Allie and Em to become dependent or rely on them.

This is usually the time when parents celebrate but for our family, it didn't really feel complete because Anna is still wearing Pull-Ups. And will be for some time. The girls understand that there is a difference between them and we are trying to educate them the best that we can. Spina bifida is extremely difficult for three year olds to understand.

Anna doesn't fight us when we cath her (empty her bladder.) It has become part of our daily routine. But lately, she doesn't want to be cathed. She wants to go on the potty like her sisters. How do I know this? She has told me. So now whenever I say, "Come on Anna, it's time to do your peeps," she responds with, "Nooooo, there's no peeps in me."

You can imagine my shock when reading a potty training book to the girls last year and seeing the sentence "Diapers are for babies." Really? Seriously? Is that even considered PC now because I can guarantee that there's a whole bunch of people out there wearing "diapers" who are most definitely not babies.

Allie has been the most inquisitive regarding Anna's status. She asks a lot of questions. If Anna wants to wear un.die.s over her Pull-Up, she can. One day, Allie said to me, "Mommy, you forgot to take Anna's Pull-up off," when Anna was running around with un.die.s on. Allie has asked why Anna still wears a swim diaper. Then there was the night that Allie had peeped in her Pull-Up and when I asked her why, she responded with, "I went in my Pull-Up just like Anna."

On Saturday, I asked Allie to put on her sandals so that we could leave the house. She was sitting on the kitchen floor with Elmo lying in front of her. He was on his back and Allie was holding his legs up. She said, "Hold on, I'm doing Elmo's peeps." She was pretending to cath him.

We always explain to the girls that the boo-boo on Anna's back hurt her nerves and she can't feel when she has to peep or po.op.

Anna had been on a low dose of antibiotics from birth until a few months ago. Repeated testing has shown that her kidney reflux reversed on its own and she has never had a UTI. Her urologist and kidney doctor decided to stop the antibiotics because she was doing so well. We were happy with that decision because we really didn't want her to be on medication if she doesn't have to be.

Anna was acting a bit off this past weekend. Sunday night, we confirmed that she was running a low grade fever. There were too many floaties in her urine and I assumed that she had a virus and was a little dehydrated. When the situation didn't improve, she was rushed to the doctor. We received confirmation today that she does in fact have a UTI. The lab is still running tests to see how bad it is. Her pediatrician is going to confer with Anna's other doctors to discuss placing her back on a daily antibiotic.

I'm kicking myself for not picking up on what was really wrong with Anna from the get go. She's never had a UTI and the last time she had a low grade fever, we rushed her to the hospital fearing a UTI and she didn't have one. I didn't want to overreact but with Anna you have to overreact.

Her pediatrician started her on antibiotics yesterday and today, she was doing much better.

When you have a child with Spina Bifida, you are grateful for each day that she is healthy and smiling.


Joni said...

Oh sweetie, I'm sooo sorry you have to go through this with her. It has got to be hard to be a Momma of a special needs lil' girl, and as equally hard to explain to your other lil girls about her special needs and how they are different. I imagine my Mom went through something very similar with me when I was younger and my younger brother, as I am a type 1 insulin dependent diabetic with a history of epileptic seizures and a variety of other he-alth conditions. I was ALWAYS sick, it was always something it seemed and somedays it seems that it still is and I'm 26 years old now. Sending lots of prayers and love in your direction for understanding and caring amongst your girls and others who don't understand how incredibly difficult it is ;) Good luck sweetie! Your such a strong momma! I can only hope that some day if I end up with a special needs child that I am as strong as you are.

Julia Aidar said...

Hugs, Sarah, this must be so hard. I was glad to hear that Anna will be in diapers "for some time", though. Does that mean in time she may acquire more control? I do wish that happens.

Here we have food allergies. Severe ones. So bad that they react to stuff I eat. This month we (with the doctor) decided they were so well that I could try reintroducing dairy in my diet (I breastfeed). Well, I can be glad that the horrible respiratory reactions did not happen. But in the second day Isabel had a rash so strong that she screamed in pain "it hurts, it hurts", every time she po.oped. So, reintroduction fail. And now they are reacting to traces, which they weren't anymore before.

They are only 21 months, but I dread the day when they become old enough to realize that other people eat a whole lot of different stuff that they cannot, and that we cannot travel anywhere easily or visit relatives much because of that. Can only hope that there is cure before that happens.

Ami said...

Once again, I just think it's wonderful that you educate others about a special need that many do not think of or know anything about. I often write about my first born triplet's cleft lip and palate for the same reason. There are just some PC things I feel like people should be aware of. You do such a great job mothering your three beautiful girls and there's no question they will learn empathy for others by growing up with a sister who just has to "do some things differently." :) Great post.

Hope's Mama said...

You are doing a fantastic job.

Anonymous said...

I got tears in my eyes reading this post .. especially about the part where Allie was cathing Elmo.

Don't beat yourself up too badly for not picking up on the signs earlier you are doing a wonderful job and they are blessed to have you for a mother.

I wish I could reach through the computer screen and hug all of you ... although you might freak out since you don't know me - ha ha!


Summers Family said...

So sorry that Anna has a UTI. That's really disappointing to read that only after a short time off the antibiotic she got one so quickly. Annabelle starts her low does & Ditropan as well as the 4x a day cathing on Tuesday. I'm encouraged that you are able to do it with 2 other little ones running around. Having my boys (3 & 5) while trying to do it has been one of my biggest concerns.

I LOVE that Allie was cathing Elmo!

Take care Sarah and I hope Anna feels better soon.


Anonymous said...

I'm a random long-time lurker and, though I actually found this blog looking for running tips, I now just love reading about the triplets. You are one incredibly strong lady, lady! It's inspiring. The posts about Anna's Spina Bifida are touching to me as I was a child with major health problems and this gives me a glimpse at the sort of stuff my mother went through with me. I can tell you, from an outsider's perspective, Anna is one lucky little girl to have you as a momma.

Amy said...

I read your blog all the time--came across it on TC, I think. My GGG trio just turned two, and it's fun to read about what the next year or two will bring. Wanted to pass this along: My nephew has Down Syndrome, and recently his Dad posted this on his blog. I found it so helpful to read it. And I wanted to ask, why do you write "un.d.ies" etc? Is it to prevent weirdos from getting to your blog on a perverse Google search? Best of luck to you and your girls. --Amy

Sarah said...

Thank you all for your kind comments. I teared up reading some of them.

Nicole - you will be fine cathing Annabelle - it's amazing how quickly the siblings "get it."

Amy - I will check out that link. THank you. And yes - un.die.s = keeps the weirdos from picking this up during a google search.

Berg said...

You have some lucky kids! I love how you make Anna feel as much like her sisters as possible while still educating the girls in what spinia bifida is. Your girls are going to be three very kind accepting children, learning to accept and embrace differences at such an early age. Keep up the great work!

Amy said...

((HUGS)) Sounds like you are doing an amazing job of parenting three girls with different sets of needs. I love how you explain things to the girls. Thanks for giving us more insight into how spina bifida affects your lives.