Julia & I had a wonderful weekend. We left the hospital Fri. afternoon & didn't have to return until tonight. As usual we met some new friends. So Julia has spent lots of time socializing, like the social little butterfly that she is :) We took a bus to the mall, went for walks, did a little baking. It was very refreshing, so now we are ready for the next few days :) Tomorrow morning she will receive the cyclodextrin during her LP & then we will probably spend most of the day resting in the hospital.
Please feel free to check in as often as you like. I'm going to try to keep adding updates as often as I can or as they are relevant. Our main goal with this website is to bring awareness to Niemann Pick Disease and tell the story of our little girl. I truly believe God sent us an angel when he sent Julia to us :)
Email us @ Juliasjourney@outlook.com