What does all of this mean?

Landon was diagnosed early. The youngest diagnosed here in Pittsburgh was 22 months old. We are so grateful for very proactive doctors! Landon will begin taking the only medicine that treats this, Cysteamine. He will take this medication 4 times a day and it works by removing cystine from his body. They Cystine presents in the form of crystals, all throughout his body including in the eyes. Landon does not yet have crystals in his eyes, but when they do form, he will begin using eye drops 6 times per day. He will probably have a high sensitivity to sunlight when they develop. At some point in his life, probably in is teens, he will need a kidney transplant. We have been told that availability of a kidney is generally good and that often times parents can donate a kidney. Recovery time is often easier for the recipient than the donor! It will probably require about a week in the hospital.
We were told that Landon will have a normal life with some bumps in the road. Medicine compliance is essential and really determine his quality of life, how the disorder will progress and longevity of his life. He currently has a feeding tube called a NJ. It goes through his nose to his intestines and bypasses his stomach. He was vomiting so this ensured that he would keep down the formula. This is temporary. We just need to get him to his fighting weight! On Friday, he will have a surgical procedure to insert a GJ Tube. This will go into his belly to the intestine. He will only receive feeds for the next month or so but the purpose of this is to ensure medicine compliance. They said that the liquid form of the medicine tastes terrible. He could refuse to take it or vomit as soon as he does. It will also help to keep him hydrated. Kids with Cystinosis drink a lot and urinate a ton. If he needs fluid then it will be easy to get them to him. I read that most children urinate about every 3 hours, kids with Cystinosis go every hour to hour and a half.
Despite this being a rare disorder, there is a lot of research and support available, from what we have been told. It is treatable, not curable, but our baby is only a year old. They have plenty of time to figure it out!!