That Can't Be Landon!

Today my mom and I took Landon to his appointment with his nephrologist. The appointment went well. We learned that Landon's levels look great. His calcium is a bit high (just a tiny bit) so she wants to keep an eye on that. His phosphorus level is at a 3 right now, ideally they would like to see it at 4. It has improved over the past couple of months. We will now see her every 3 months and will get blood work every 6 weeks instead of 4 weeks. It's a strange feeling. I like the reassurances that I get from seeing Landon's doctors regularly, but on the other hand, I love the idea of having a "normal" life and not going to Children's Hospital every couple of weeks. Plus, now that flu season is around the corner, I certainly want to stay away from hospitals in hopes to avoid a rough winter!

I have to say that I find much comfort in seeing Dr. Nguyen. For one thing, she was with us through our entire stay at Children's Hospital. She was one of the 3 doctors who sat in front of me on June 6th and told me that our son has Cystinosis. Today she saw Landon in the hall with my mom and said that she checked the schedule because she could not believe that it was Landon. She said that he looks wonderful and has put on so much weight. It's so good to hear especially since I am with him every day, so it's hard for me to see the difference.

We also got to meet another doctor in the practice, Dr. Ellis. He has a lot of experience working with people who have Cystinosis. He complimented our efforts and involvement in Cystinosis research and in the community. He was so positive and optimistic and told me about a man who has a son in his early 20s. His son is doing wonderfully and he said that he does not look sick at all. He experiences very little problems with his eyes because he has been so consistent with taking the medicine and putting the eye drops in his eyes. That was also very good to hear! It means that this disease does not have to get the best of Landon and that there is some control in all of this. Will it progress? Yes. Will crystals develop in Landon's eyes? Yes. Will he need a kidney transplant? Yes, not for a very long time, hopefully! But, his future looks bright!