Happy Birthday to Me!

My birthday is this week, the big 3-0! I'm feeling good about it. I'm in a good place in my life.. I have two beautiful little boys, happily married, a home, a great family, great friends. What else do I need? I got an awesome early birthday gift on Friday. We found out that our insurance approved the 12 hour drug to replace Cystagon (the current drug that slows down the progression of Cystinosis). It's approved with an $80 copay. Fortunately, Landon has secondary insurance too so there is a pretty good chance that the secondary insurance will cover the copay but if not, the specialty pharmacy has a program to assist with this. We'll make it work, no matter what! The representative from Raptor Cares (a program created by the pharmaceutical company that created this drug) gave me this information and followed it up by asking if I want them to move forward. With tears and my eyes and excitement in my voice, I calmly said "yes, please." I have noticed that since Landon was diagnosed my feelings are more exaggerated than they used to be. When I'm nervous, sad, angry... my heart races and I have to remind myself to take deep breaths. I recognize it.. When I'm happy or excited, I feel overly excited- I think and talk much faster. Once I got the news, and had a bit of a break down, I made a couple phone calls, text messaged the news to our family members and put it on Facebook. Then I had to jump in the shower to get ready for date night with Jimmy (coincidence that it occurred on a day when we both wanted to celebrate) and to help calm myself down. So why am I so excited and emotional about this? Several reasons enter my mind.. I haven't slept through the night since Landon was very young (definitely before he was diagnosed).. My body has adjusted to waking up but a full night's sleep would be so nice, especially since Jordan is sleeping through the night most nights. Most nights, I get 4-5 hours of continuous sleep and after that it's broken up. This isn't the main reason though... Those who have been in the study to test the efficacy of Procysbi have reported that it was life changing... Many on this new drug report less stomach problems, eating better, feeling better overall... Now I will say that Landon doesn't exhibit many stomach issues. He rarely throws up now and eats pretty well at lunch and dinner time. So maybe we won't notice much of a difference, or we may realize that the Cystagon was affecting him. But, I think the reason I am so excited is because we are seeing progress. The researchers are moving forward, they are getting results.. This is why fundraising is so important to us. The money that we donate counts, it really does. It is being used to fund current and future studies. So what is the difference between Procysbi (new drug) and Cystagon (current drug). It is essentially the same drug (from what I understand) except it is a delayed release drug allowing people to take it every 12 hours instead of every 6 hours) and it enters the body through the intestine rather than the stomach (hence the report of less GI problems).. This always takes me back to Landon's diagnosis. The tube that was initially inserted allowed milk and fluids to bypass the stomach and go right into the intestine. Landon threw up anything that went into his stomach at first so this was the best option for a while. There are some guidelines that we will have to follow. I'm actually amazed at the families who had children with G tubes in the research study and figured out how to get it through the G tube. Right now, we mix Cystagon with water and insert it through the G tube. It's never a problem. However, the new drug will not successfully pass through the G tube with water. After some experimentation, the families in the study learned that you could use applesauce to push it through the tube. friend of mine created a YouTube video for us newbies to help show us how to give the new medicine. You open the capsule, empty it into a certain amount of apple sauce, then use orange juice to collect the reminder of what was left. Our schedule is going to have to change a little bit as well... You cannot having anything to eat 2 hours before taking the drug and 30 minute after. It will take some getting used to but I can't wait to have it in our hands!!! And who knows, maybe I will be blogging about a cure by my 35th birthday. That will be my wish this year when I blow out my 30 candles.