During out trip to Chicago we were very excited meet the family much responsible for the way that I feed Ayden Jane. When Ayden Jane was diagnosed I was not satisfied with the nutritional guidance and a few other things about Ayden Jane's care. Basically, her doctors were well meaning but I just was not comfortable with their recommendations so I searched out information from other parents dealing with syndrome. I found that the information our local doctors were going on was sound, however, outdated. It was a stressful process of stretching my brain to understand but the more that I researched and the more I tweaked things in AJ's diet, the more clear the answers became.
Lara has been a source of answers and advice and become a good friend but solely online. We had never actually met in person! We met at the zoo and the kids became fast friends. Kian is delightful and the two of them had more energy than we did! It was a bit of a race from exhibit to exhibit. It is funny how quickly the kids became comfortable with each other just from sharing a similar diet.
I had a great time meeting Lara and her whole family. Being able to just chat about things with brilliant minds (Lara and her husband LJ) and continue to attempt to understand what is going on inside these kiddos is wonderful. I admit a bit overwhelming though! It is easier to do by email when I can stop and look things up!
I also very much enjoyed being able to say thank you in person and have them enjoy Ayden Jane's success for an afternoon. That may sound strange, but in a community of parents who have lived the PWS life we just naturally cheer each other's success. I look to others for help and they give it so willingly. They become part of our family in a way. I am sometimes asked for help and I know that I instantly become attached to the families and rejoice at the successes of their children. Ha, as I reread it, it sounds a little odd, but I guess it is one of the hidden blessing of the journey.