Benjamin Button;;

People always asked what it was that the disease really did to Jordan and I always responded with, "Have you seen the movie Benjamin Button?" My son was going to get really old really fast. It was like his body was going to get to a certain growth and than start going back to baby form. I always knew all these things but hadn't experienced them yet and hoped we never were going too because by some miracle this disease was just going to go away, well now we are getting back to the baby days once again slowly and it just makes stuff worse. This week we started experiencing choking on his own saliva episodes and of course its due to the muscles weakening and the second one actually was pretty scary. Now if you think about that when you choke if you can't catch your breath than that can be very dangerous. Man, its been pretty scary. Edwin knows CPR but I don't and now Im rushing to get into a class to learn it and looking and YouTube videos to make sure that I am trained in knowing what to do if they continue. We are scheduled for some testing to see what really might be going on and well I know we aren't going to get good results as we are seeing these situations happen so yes we need to make some changes to his diet, Whoa that was a lot that I just put into words that was all floating in my mind. Theres so much that goes into one event can you imagine all the different events and stuff we have to think about. Well a couple nights ago after I put the kids to bed I was laying in bed with Edwin and I told him I think its time I get a baby monitor he looked back at me so confused. Why in the world do you need a baby monitor?! The kids don't sleep in our room ( I don't think kids and parents should share a room) but if he has a choking situation in his sleep or in the middle of the night and I was unable to get to him in time I would not be able to live with myself so I thought a baby monitor can help me see him and hear him to be sure he is okay during the night. Oh parenting, do we ever really sleep?! Today we went out to get one and I'm hoping I can sleep a little better knowing I can hear him this way. This week has just been rough, I feel like I've been saying that a lot but I rather admit it and feel because Im sure lately its been rough for Jordan.

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