Yesterday was a little rougher than usual. Julia had her LP in the morning, but for some reason there was a little trouble getting the needle in & then when they did she could feel it. She cried because it hurt so badly. It's moments like that that make me question if we are doing the right thing by putting her through all this, but ultimately I know that answer is yes! It is absolutely worth it! While we are not seeing improvement by leaps & bounds we are seeing stability & that is huge. The good news is we also have ideas for next month to ensure Julia doesn't have to be in pain for next months LP. After her LP was done Julia had a visit from a therapy dog named Donizetti, or Doni for short. It really helped her feel better after the painful morning.
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