A little over a week and I will be a college
graduate! It has been a long road but I feel so accomplished. The only thing
between now and then is about 400 nclex questions, 3 days of nclex prep, and a
12 hour clinical day tomorrow. I will be running down the aisle to get my
diploma and then running to the airport to catch our flight to Paris! I cannot
wait to spend 2 weeks away. France and Italy, here we come!
As for Lilly news… She is officially high speed crawling
and pulling up on everything to stand. I am thinking no rods at this point. Dr.
Esposito agrees but wanted x-rays to confirm. Still waiting to hear back. Lilly
amazes me every day with her abilities. I truly think the swimming every Friday
night makes a huge difference as well as her infusions. She is so strong. Her PAM
infusion was scheduled for today but I guess the medicine was backordered so we
have to wait until next week.
After a month and a half I finally heard back from
the insurance company. She was approved… at tier 4. Their reasoning was the OI,
infusions, and low weight. The first two, fine but low weight!?! Are you
kidding me? Had I quit school or not gone at all, we would be screwed as far as
insurance goes. Group insurance is our only hope at this point.
We are officially going to the OI Convention in
Washington DC this year. I am so excited to learn and meet all of our friends
from across the US. I am also excited to start becoming a stronger voice in the
community for OI. There are a lot of great projects that are in the works. I am
shocked by the amount of medical professionals who look at me funny when I say
Osteogenesis Imperfecta and even brittle bone disease. Hopefully that will
change as we begin educating and advocating more.
Speaking of advocating: What are you wearing on May
6 for Wishbone Day? I can only hope my friends and family help us advocate by
wearing yellow. It’s one day of the year and I’m sure you have something yellow
in your closet. Show your support by wearing yellow!
