She wheeled up to the adapted potty chair in the family bathroom at the preschool. She unbuckled the seatbelt on her wheelchair and carefully pulled herself out of her wheelchair. I was kneeling on the floor by the toilet and she clung to my shoulders as I helped her out of her clothes.
Once she was situated on the potty, she prepped the catheter—just like we'd been practicing for weeks—and for the first time, she cathed herself. Not that she didn't require help. Not that she took care of every step of the process. Not that she could even reach the faucet to wash the catheter when she was done. But she’s only four-years-old. And the prediction was that she would start to learn to cath herself when she was seven or eight years old.
But she is FOUR.
Which means she did it four years early.
I should not be surprised. She is Esther-Faith. Esther-Faith does EVERYTHING on her own timeline. Predictions, diagnoses, and opinions mean nothing to her. In fact, I think every time she hears "can't" or "won’t" or "doesn't" she also hears "I dare you" or "prove me wrong." And she pretty consistently does.
It has been a long process. We've been working up to this. But her willingness. Her desire to be as independent as we'll allow. Her unbelievable tenacity. Those things combined with a physical therapist who made sure the environment was appropriate and welcoming created an early opportunity for Esther-Faith to learn to cath herself.
And now we can't wait to tell her Urologist. Or at least the nurse. Because even though she did it early, Esther-Faith is typical when it comes to needing these specialists. According to "Living with Spina Bifida" by Adrian Sandler, "About 95 percent of children with myelomeningocele have a neurogenic bladder."
And as is the case for most children, Esther-Faith has also had the litany of tests that come with having a neurogenic bladder. Some of those tests include:
Renal Ultrasound: during which pictures are taken of the ureters, kidneys, and bladder to determine the structure of the urinary tract. This test is important to determine if hydronephrosis or hydroureter exist.
Voiding Cystourethrogram (VCUG): an x-ray of the urinary tract that is taken after a special fluid is placed in the bladder.
Urodynamics Exam: a test to meausure the stiffness of the bladder wall using pressure monitors inserted into the bladder.
One of the primary things the Urologist does is help you keep your child's urinary tract clean and healthy. One way this is accomplished is for the Urologist to work with you to determine whether or not a child needs Clean Intermittent Catheterization (CIC) and if so, how often.
Each time we go to clinic, we provide the Urologist and the Urology Nurse with a cathing report that summarizes Esther-Faith's routine (how often she is cathed), her diet, her habits, her output, any changes, if she has had a urinary tract infection, and whether or not we've had to administer a bladder wash. This information helps the Urologist know what tests to order (if needed) and what advice to give us with regards to cathing, diet, etc...
The Urologist also helps monitor for UTIs, kidney issues, and other problems. S/He will also prescribe diagnostic tests and provide feedback and follow-up. The Urologist has specific knowledge in the function of the kidneys, ureters, and bladder. And s/he will be able to help you help their children achieve urinary continence.
Info for this post came from:
"Answering Your Questions About Spina Bifida" published by the Children's National Medical Center in Washington, D.C., 2003
Sandler, Adrian. "Living with Spina Bifida: A Guide for Families and Professionals." Chapel Hill: University of North Carolina Press, 2004.
Lutkenhoff, Marlene, ed. "Children with Spina Bifida: A Parents' Guide." Bethesda, MD: Woodbine House, 1999.