The number one thing that any loved one needs to know, is how to be pro-active without being overbearing. It can be tough because that line tends to be blurry. Other than my early attempts to cook for Owen, I did not know what to do or how to do it. Fortunately, a visit to his nutritionist and Dr. Wilson changed all that. They told me about the cookbook and the updated food list.
It was a lifesaver and led to Owen enjoying meal time and trying to eat more because it was so good. The recipes were easy to modify (we like to make a huge batch of the baked vegetable stew...just add cheese for non-pku people) and with the updated food list, we found new items for him to try. Rice milk was the biggest change. It is lower in phe than non-dairy creamer and much better for you than that chemically made stuff.
My next lesson in being pro-active came when I met the wonderful families involved with Ryan's PKU Foundation. We were attending the Walk-a-thon in 2007. Owen is part of the 501st, a Star Wars costume group. A large group of them came to support him that day. I enjoyed meeting the people and getting to know some of them. The same event the next year put us in touch with the wonderful ladies who helped me get Owen onto a better formula. His was hard to make, expensive to get and the insurance was being a pain. The ladies with VitaFlo were wonderful and together we worked hard to get Owen on it and to get it ordered and billed through Apria, which stopped fights with the insurance. Praise God, this change has been wonderful for him. It was also there that we met the representatives from Biomarin.
It took a second meeting and several calls with them to get Owen on a trial of Kuvan. Our second meeting was at the UVA PKU Picnic. It was there that I also found out that a family in the area had a adult daughter with PKU. Owen actually works in the same county government as the father. Listening to Mrs. ___ tell how it was to raise a child with PKU just to watch her fall from diet inspired me to start this blog. If her daughter had more outside-the-family support, would she still be that way? If her spouse had somewhere to turn, would it make a difference? What about her parents? Could this help them? I only hope...
It was all of those connections that led me to this next lesson in being pro-active. This weekend, thanks to Ryan's parents refering us, Owen and I will travel to Orlando for the formation of the National PKU Alliance. Together, Owen and I will be attending meetings whose outcome could make changes for all PKU families.
Be proactive, be there, learn, support. I am here for you.