It's been a whirlwind week for us. We decided about 5 months ago that for Christmas this year we wanted to go on a family cruise, Jason & I have talked about it forever, but we had just never done it. I am so glad we did, if we knew then what we know now, we would never have spent the money. But by the time we had our diagnosis & an idea what we were facing the money was already spent. While the cruise wasn't quite everything we had expected we did have ALOT of fun!! We spent 4 days on the ship in the Bahamas. Everyone was sick the first night & spent the evening in the cabin. But we managed to crawl out the next morning & enjoy the rest of the cruise untill the last night when we were all sick again. While their were many fun parts in between, I can tell you none of us are in a hurry to get back on a ship any time soon :) We stepped off the boat on Dec 19th & drove from Port Canaveral to Tampa got a room for the night & then flew out to MD @ 7 the next morning. We have been in MD @ the National Institute of Health since then. Julia is participating in a natural history study of NPC here @ NIH. Tues Dec 20th was spent mostly on getting checked in & paperwork. Yesterday Julia underwent a an MRI, a lumbar puncture, & a skin biopsy.She was under for about 3 hours slept for about 2 hours longer after the procedures which kept me a little nervous. But as usual she breezed through everything beautifully, she is one tough cookie. She suffered no after effects of the anesthesia nor did she experience the thing I feared worst, the post lumbar puncture headache. We have been staying @ The Childrens Inn, a place on the NIH campus for families with children visiting NIH. I must say this place is amazing, as are Nicole Yanjanin & Dr Porter. They have taken wonderful care of us during our stay & all of their evaluations have provided us with alot of information for us to go through & things to think about.Imust end this here for tonight, I will try to finnish updating in a few days.
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