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.
Sunday, October 7, 2012
Facing the Inevitable, maybe?
Well our poor boy was sick with a cold this weekend... Runny nose, sneezing, congested, coughing. No fun! We pushed Pedialyte through his feeding tube and were able to get some of his medicine in him- enough that my anxiety wasn't through the food because he was missing doses. Thankfully today he tolerated some milk and all of his medicine. I really hope that his belly makes it through the night because he is getting milk. You know how it is- milk and phlegm do not combine well!
Other than that all is well... We are still working on transitioning to preschool. I left him twice and the third time I tried he got so upset that be threw up. So with encouragement and reassurance from him teachers, and others in our lives whose opinion on early childhood stuff I trust, I am staying in the classroom with him to give him time to develop a relationship with his teachers. Many would say that I just have to bite the bullet and leave, but its not something that I feel ok about and have to trust my instinct. A friend and mentor of mine asked what my goals are for Landon. My goal is for him to become a little more independent and to learn to trust adults who are not his parents or family members... We are getting closer. He does ask his teachers for things now. He sits with his friends at snack time and actually eats. He doesn't depend on me to get him a drink or play with him as much. And he goes to the gym without me... Baby steps... We are getting there though.
Lastly, tomorrow is a doctor's appointment that causes me the most anxiety- opthamologist. I'm getting used to lots of good or uneventful appointments. We will probably be told tomorrow that there are crystals present in Landon's eyes. At the age of 2 1/2, it is likely that they are there. This means that we will start giving him eye drops 3-4 times a day, to start, and will increase that to 8-10 times, or preferably every waking hour of the day. It's a bit overwhelming for me to think about because it may come at a time in which Landon is not always cooperative and will tell me no and will kick and scream to be released from my hold to avoid what I have to do. I am sure we will learn tricks to be more efficient. I know it will get easier... I know...
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