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.
Wednesday, July 18, 2012
Smarty Pants
Landon has a new "trick..." Jimmy reported it to me when I returned home from a 10 minute trip to Rite Aid and it happened again today. Landon asked me to eat but his Occuoational Therapist would be there in a few minutes so I told him to wait a minute. Minutes later and walks in the living room with a bag of salad in one hand and Ranch dressing in the other. Yes, he can open the refrigerator door by himself. Life just became a bit more complicated...
Sometimes it hits me that I don't give my boy as much credit as I should although generally that really works in his favor. We have had an issue with the piece on his feeding tube which we unplug to give meds, becoming unplugged and leaking on his bed. I have changed the sheets countless times over the past 2 weeks. Tonight, I decided to put a piece of table over the opening in hopes to avoid another mess. Please note that I have not blamed Landon. We read stories, I hooked him up to his feed, gave meds and put on my trusty piece if tape. A certain little boy did not like the tape idea and loudly protested. Guilty maybe?
He is such a sweet boy with a great disposition. He is silly and so much fun but he is becoming quite a little handful at times. And, I admit that I wouldn't have it any other way... Well, maybe sometimes . :0)
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