Panties are Priceless

She opened many great presents for Christmas...two purple race cars, an Elsa Barbie, new uniform clothes for school, craft and paint sets, an American Girl doll, and a three-wheeled scooter. But the gift that received the best reaction out of Adria was the package of Princess Panties!

Our little six year old literally went "nuts" over receiving her first package of underwear. She squealed in delight then hugged and kissed them. I have proof, watch this...



Why was she so excited about this gift? 

Because she wants to wear panties to school!

Princess Panties...one of her favorite Christmas gifts!

Adria has needed to wear diapers or pull-ups her entire life. This has been necessary because, like many with spina bifida or spinal cord injuries, she has what is called a Neurogenic Bladder and Bowel. For our daughter, this is a result of the nerves never fully developing that control her ability to urinate and have a bowel movement.

At two years old, we had to start a catheterization routine with her to empty her bladder and prevent UTIs (urinary tract infections). At four years old, we started a bowel program that involved medicine and mini enema stimulants to empty her bowel. Still, it has never worked perfectly to keep her diapers clean and dry, often causing her to have embarrassing odors from loose stool.

BUT...we are making progress! In early December, we started a new bowel program called Peristeen, which I shared about in this post: An Answer to her Stinky Situation?  

We have used it every night for a month now and are very pleased with the results. Yeah!!! Since starting this, Adria has had very few ACCIDENTS in her diaper!

The Peristeen system is pretty involved, as it is basically an enema with a rectal catheter that inserts warm water into her intestinal tract to clear it out. This is not very pleasant or comfortable for her, and she was afraid at first. But when we told her that doing this might enable her to wear Panties to school...she was willing to try and has been so great with it!

This is the Peristeen enema system that she uses every night to empty her bowel.

And that's why Adria was so excited to get her first package of panties. She has longed to wear them to school, like the other children in her class... It's something she talked about often. At times even saying things like, "I wish I didn't have spina bifida, so I could go to the bathroom and wear panties like everybody else." :(

Her First Day wearing Panties to School

Yesterday was the big day! Adria wore a pair of panties to school for the first time!

She was very excited about this day. She had been counting down since Monday when she returned to school after Christmas break. Mommy told her we would try the panties on Friday, after I had the chance to talk with her school nurse and teachers about the new plan.

I spoke with her school nurse to make sure she was comfortable with the change. The nurse is very supportive and has been a huge blessing, since she must catheterize Adria every day after lunch. I also cautioned Adria's teachers to be on the look-out for any possible accidents or leakage. Her kindergarten teachers are so great, and I completely trust that she's in good hands.

Friday went well with no leakage or accidents! This is a BIG STEP for Adria and for us.

We do still need to put a pad in her underwear, because when her bladder gets too full it can cause leaking...sometimes more than a pad can handle. But the holiday break from school gave her Daddy and I the chance to try out the panties on her and determine how it would work best.

We all hope and pray that the new bowel program continues to work well and that she can stay mostly dry at school. SHE LOVES HER PRINCESS PANTIES!

FAQ

People sometimes ask questions about Adria's health and this issue. That is totally fine with me, as I believe questions are an indication that you care and seek to understand. Here are some answers to Frequently Asked Questions:

1. Can Adria feel when she needs to go potty? No, she cannot feel the urge to urinate like most of us. However, she does feel pain when her bladder gets too full and will complain that her tummy is Ouchy. When this happens, she must be catheterized immediately. 
2. Does she know when she has a stinky in her diaper? Rarely. She has very limited sensation in that part of her body and does not know when stool is coming out. That said, sometimes she will feel pressure when it needs to be emptied.
3. Will she ever be able to GO on her own? Since the nerves in her spinal cord that control bowel and bladder function never actually developed properly, it is highly unlikely that she will ever have the ability to empty without medical equipment. However, in the near future we will be working to teach her how to catheterize herself... That feels somewhat daunting to me.
4. How often does she need to be "taken care of"/catheterized? We typically empty her bladder with a catheter every four hours, except during the night. She sits on the potty to empty her bowel with the Peristeen for 30 minutes every night.
5. Does it bother her to be catheterized? In general, no it does not hurt her. When we first started four years ago, it was very difficult to adjust, but now cathing is just a part of every day life that we are all used to.
6. What exactly is a neurogenic bladder? Here is the description from the Urology Care Foundation, plus you can follow this link for more information. It affects many more people than just those with spina bifida........ Neurogenic bladder is the name given to a number of urinary conditions. It is the result of problems with nerves in the body that may control how the bladder stores or empties urine. These conditions include overactive bladder (OAB), incontinence, and obstructive bladder, in which the flow of urine is blocked. Many women and men have these bladder problems, including people with illness and injury that affect the brain and/or the spinal cord. This includes people with Multiple Sclerosis (MS) and Parkinson's disease, and people who have had stroke or spinal cord injury. People who are born with problems of the spinal cord, such as spina bifida, may also have this type of bladder problem.