As I’ve stated before, it’s that time of year again. But this is an entirely different time of year. It’s the time of the year to address the white elephant in the room in our family. For most of the year we go on as a normal All-American family with busy schedules for both the parents and kids. But come about March we are always starkly reminded.
We have a sick Mouse.
Mouse was a nickname given to Alex when she was a baby. She didn’t cry. She squeaked. And it was about that time we noticed something wasn’t completely right with our daughter.
She was always a spitty baby. But at one she went from spitty to outright vomitting. It would happen every three weeks like clockwork. She would start out her cycle like a normal toddler for about two days. Then she would become less energetic. She would sit on the floor of the playroom at my mother-in-law’s daycare and watch the other kids play. She didn’t have the energy to play with them. It broke our hearts.
And at the end of three weeks all hell would break loose. She’d start vomiting. Then she would just lay there in her crib and stare into space for a few hours. Then magically she would pop up and demand something to eat, usually mac and cheese. And the whole three week cycle would start over – and over – and over. She had to be hospitalized once for rehydration.
I argued alot with physicians. If I didn’t like one, I’d find another. Finally, a year and a half later I found a caring, wonderful doctor, Dr. Bishop at the University of Iowa Hospitals and Clinics, to look at her and run tests. He diagnosed her. Cyclic Vomiting Syndrome. The bad news – she was the youngest case he had ever heard of and didn’t know how to treat her. He gave her medication but predicted it probably wouldn’t work for long. He was right – it lasted three months. However in the meantime I did research of my own and found that the foremost authority in CVS was in Chicago. Dr. Bishop transfered her to Dr. Li in Chicago happily.
Dr. Li examined her and took her history. It took three hours during which Alex happliy played “catch me if you can” with the giggling receptionists. He confirmed the diagnosis and prescribed her meds. They worked. Within a couple weeks she was a normal child for the first time in her life.
Having CVS in our lives has been a roller coaster. We have good stretches. We have bad stretches. Alex has been hospitalized six times. It’s rough on the boys – it kills them to see their baby sister suffer. They have become overly protective – more than standard brothers would be.
But if it did anything, it turned my baby girl into a fighter. She makes no excuses for anything. She tackles things head-on and makes the most of the opportunities she’s given. And, other than a pill she has to take at night and a new regimine of aromatherapy to help her sleep, she is a completely normal nine-year-old.
This time it started with one specialist, the neurologist, cancelling our appointment and rescheduling it for the following week. That call followed a long white knuckled fours hours praying that Dr. Li (who is now in Milwaukee) could squeeze us into a full schedule booked into September. Thankfully prayers were answered. We go to Milwaukee to see them both in June.
Then the entry forms for the CVS 5K run/walk for a cure arrived in my e-mail inbox. We talked and started making plans to participate. I even came up with a name for our “team” (the five of us in our family) – The “A” Team. For Alex’s team. Sort of hokey but it works…
And with the start of spring begins the storm season. Violent storms are Alex’s primary trigger – the stress gets to her. She weathered the first thunderstorm well with unusual spunk cracking one liners the entire time. That’s my girl!
We will weather this time of year as we always do – as a family.
My Life Herding Cats 