This blog began when our then 14 month old son, Landon, was diagnosed with a rare, metabolic disease called Cystinosis. He is 1 in about 2000 in the world. We have come to realize that this was only a chapter in our book so this blog will share all of our adventures.
Saturday, July 7, 2012
Busy Days
Busy, busy here in the Hartz household and all wonderful things! We took our first vacation last week to Cedar Point. It went better than expected in that Landon napped, slept and traveled well! We have such a great routine at home and mama is particularly persistent about keeping with that routine. Daddy is a little more willing to be flexible which worked out great for vacation. Our little guy particularly enjoyed the new animated dinosaur tour that we experienced. Rides? Not so much! Landon doesn't appreciate not being able to sit on our lap and he seems to know when it is not an option so was very unhappy. I love to ride and have visions of riding roller coasters with my boy as he gets older so I was admittedly a little bummed. But he is only two so I still have time to "encourage," right? This trip made me extra excited about our upcoming trips to the beach and to Hershey Park!
Yesterday was our first annual Lots of Landon Golf Event. It was a great success and we are so grateful to our brother-in-law and his good friend who planned it. Jimmy and I learned so much!! There were 65 golfers there despite the record breaking 99 degree weather!! Everyone seemed to have a blast ands we were overwhelmed by the generosity of so many who have never met us or Landon along with our family and friends. There is already talk of next year's golf event!! I will post more about it with a link to pictures soon!!
As you know, last month was the first anniversary of Landon's diagnosis. We have experienced lots of firsts over the past year. Around this time last year, we went to Jimmy's cousin's daughter's birthday party. We surprised everyone by going because Landon had just been discharged from his month long hospital stay. With some anxiety, we packed his meds and feeding tube and ventured out on our first outing with a little guy whose special needs we were still getting used to. We realized that day that nothing would stop us from experiencing life and that this would all become normal for us. And, it has! We are a good team- Jimmy and I have always said that. And we are surrounded by incredible people!! We are so blessed... Landon is so blessed... And this little peanut that will join us in January will be just as blessed...
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