My pediatrician calls the other day saying that he may have finally found a specialist that can answer some questions about my daughters illness... Can I be there in 8 days? he asks.
Oh yes I can, thank God, its about time.
My daughter happened to be doing very well the last few days, but the doctors around here didn't know why she was going up and down, and it had become an ominous weight smothering our life. She is not much disabled, but she gets deathly ill and her left arm is not keeping up with the other. They know her blood and urine labs are off the charts, but not how or why.
She had beaten long bouts of sickness before with full life support, but I didn't know where this condition was ultimately going to take her.
I didn't have much control of the situation so I resolved to make sure that no matter what, this girl lived a real life and enjoyed this world. The outdoors called and we came.
No movies, no TV, no play lands, Just a lot of outdoor exploring and side by side time - without the interruptions and disconnects of modern life.
No strangers to adventure, we were packed and ready 2 hrs after the phone call, and on our way to Salt lake primary children's hospital via dirt roads and 8 days.
A brief discussion ensued before our departure on what vehicle to take. She wanted to take her Mattel made FJ, but I was stubborn on the Tacoma
Pintler Mountains in Montana
Getting into Idaho, This is the City of Rocks
Utah, NW of a big salty lake
We eventually had to head back up to Salt lake for the appointment.
It turned out great, the doctor had tremendous insight on what and how things happened and a really good outlook for treatment. Long story short, some of her organs didn't develop properly due to a massive heart condition and swelling as a newborn. The swelling was caused by all the medications, blood transfusions, and fluids that were pumped into her right after birth and for weeks there after. She nearly doubled in size which caused pressure inside her to cut off the blood flow to parts of her organs. She was getting weird infections because of this but not the proper meds to deal with it so now it should be a whole new story, and it has been!