Roller Coaster Ride

In Memory of Haley Stonehocker . . .

It has been a while since I posted anything new to this blog. Quite a bit has happened in the last several days. First, Faith was diagnosed with a fungal infection about a week and a half ago. Her pediatrician told us then to expect her to get more infections now that she has gastroparesis. Seeing that Faith was diagnosed yesterday with an overgrowth of "bad" bacteria in her small intestines, I guess I will need to surrender to the fact that this is true.  I worry about the impact of two strong medications, Fluconazole for the fungal infection and Neomycin for the bacterial infection, on Faith's body, especially since they have been prescribed in such a short amount of time, but I just have to place my trust in the Lord that everything will be alright. I am trying to figure out why most of the medications they prescribe for people with gastroparesis carry the potential to actually leave the body more damaged than what it already is with the disease itself. For example, the Neomycin itself has the potential to cause kidney damage, nerve damage, or hearing loss. I constantly have to remind myself that the medications Faith is currently taking are meant to help her have a better quality of life. However, for a child who hates taking medication - she would honestly lock her jaws together as a child to avoid taking a fluoride tablet - taking her daily regiment of prescription strength acid reducers, nausea medication, pain medication, infection(s) medications, probiotics, and vitamins is somewhat torturous, especially as swallowing is sometimes impossible due to the pain. Thank goodness for chewable vitamins! 

A few days ago, we discovered a Facebook group for people in their teens and 20's who have been diagnosed with gastroparesis. It is called The Gutsy Teens Lounge. We learned about this group when our local TV news (KSL-TV) ran a story about a girl from Utah named Haley Stonehocker who just passed away from complications due to gastroparesis and another condition known as POTS (postural tachycardia syndrome.) Apparently research indicates that people with gastroparesis may be more prone to develop POTS because of the damage to the autonomic nervous system that comes with GP. Faith was deeply struck by the positive attitude demonstrated by Haley despite her illness, and she was touched by the stories shared by other young women who suffer from GP who spoke to the reporter. It was a great help for her to learn that there are a few other people out there who have idiopathic gastroparesis in the Rocky Mountain area. Since her diagnosis, Faith has been determined to live a happy, productive life despite having GP. Being a part of this special group will help her maintain this goal. This news story also led me to make the decision to sign up to volunteer with the G-PACT group to help spread awareness of gastroparesis and hopefully get more funding for research of this disease. Our thoughts and prayers go out to Haley's parents and family. Thank you for sharing your beautiful daughter's life and light with us. 

On a more positive note, Faith has managed to stay on a diet of solid foods for almost a month. While we realize that much of this is due to the fact that she limits what she eats at a meal to about a cup of food, but this is a real milestone as she used to throw up two or three times a week. We have decided to celebrate the small triumphs to help us stay focused on the positive. Life may be a roller coaster ride, but that doesn't mean that we can't learn to appreciate the thrill of living.