Donate For Landon
Life is an Adventure with Landon and Jordan
More than 2 years have passed since we sat in the hospital and learned that our perfect little boy was sick. We felt like we were in the middle of our worst nightmare. I remember telling the nephrologist that we did not want to know anything about the disease until we knew if Landon had it. Curiosity got the best of me and as I held back tears, I asked if Landon would like a “normal” life. Will he be able to go to school? Is he going to be able to play sports if he wants to? His response was, “He will live a normal life with some ups and downs.” He was right.
Landon has made tremendous progress in the last two years and really is a typical 3 year old. Our lives used to be centered on Landon’s needs and this disease, but as we developed a new norm and a new routine, we have had to think less and began to live and enjoy more again. Two years ago, we had a baby who had a lot of anxiety, who was really behind on his gross motor skills and had rickets from malnourishment; who vomited daily, who depended on a feeding tube for nutrition and did not stick a piece of food in his mouth and who was not anywhere near being on the growth chart. Today we have a little boy who goes to preschool and just today left his mom’s side to go with a substitute therapist he has never met. He runs, jumps, climbs and his bone health has dramatically improved. He rarely vomits and stays pretty healthy. He is finally on the growth chart for height and weight and no longer uses his feeding tube. It was a very happy day in our house when Landon’s nutritionist recommended that we stop the feeding tube, night feeds included, and give him toddler formula through a syringe. We have been able to cut back on this formula because Landon eats, pretty well actually! Landon was not eating at all, then began putting food in his mouth but would pocket it on one side and then spit it out, and then slowly he began to put food in his mouth and swallow it. We couldn’t wait until he would sit at the dinner table and eat with us and go to a restaurant and actually eat the food that we order for him.
Landon has started to use Cystaran. We are so thankful that this drug was approved by the FDA so obtaining it has not been a problem. When Landon was diagnosed, at 14 months, crystals were not yet present in his eyes. They were still not present at 18 months, 2 years, 2 ½ years and then right after his 3rd birthday we learned that crystals were present in his eyes so within a month we started putting the eye drops in his eyes. The eye drops are his least favorite thing but he cooperates with a bit of persuasion and persistence on Mom and Dad’s part.
Jimmy and I have so much hope for Landon’s future and for his health that we decided to not let Cystinosis stop us from expanding our family. On January 15, 2013 we welcomed our second little boy to our family, Jordan Patrick. Jordan was tested when he was 2 months old and we learned that he does not have Cystinosis. We were relieved but sad at the same time. We grieved for Landon all over again.
Life with our two little boys is an adventure. No one can get Jordan to laugh quite like Landon can and they take turns tormenting each other. Landon likes to lie on top of his brother and since Jordan is at the top of the growth chart and Landon is at the bottom, he is usually not bothered by it although Jordan gets back at Landon by pulling his hair. On that note, I have to admit that I worry about Jordan getting bigger than Landon. I know it is coming and I don’t look forward to it.
As a family, we remain committed to fundraising. Our annual events include a golf tournament in the summer and a Halloween party in the fall. The research is crucial and supporting it, for us, is not an option. We had the opportunity to fly across the country and attend our first CRF Conference in April. We were so proud to walk across the stage and present a check for almost $20,000 to the Stack Family. Hearing the researchers speak and being around families in which we have so much in common motivated us even more and made us that much more hopeful about the future for Landon and others with Cystinosis. We are excited for better treatment and I can’t wait for the day that we speak of the C word in past tense: Landon had this disease called Cystinosis but was cured.