Hi guys, What a crazy day I had today. Ive been at the hospital seeing my favorite Doctor and some of his friends, getting medications and hunting down my formula. See I have not been able to eat oral food for some time. I keep trying every few days but I get lots of tummy pains. I vomit and wretch and become very sweaty and pale....Eeww gross. I can still have milk (a very special formula) in my tube in my nose, that goes into all the way into my bowel.I still cant drink either. My swallow isnt good. It hurts a lot to swallow. The doctors said its my auto immune disease. My cognitive skills and motor skills are deteriorating. My body is just not doing its job anymore. I cant have any pegs (feeding tube into the abdomen), PICC lines or Central lines put in because my body attacks all foreign objects. I am on the most amount of meds I can have to help support me. I am getting tired easily but you know me I will keep on trying. I have lost another 500grams in 1.5 weeks. I have no reserves left so my body is relying on my liver and other organs to for my reserves. This isnt very good because my heart is so big (because it works so much harder than yours) that it too relys on my liver which is also bigger than it should be. Its all so hard for me to understand why nothing works good anymore. It makes me really sad, I just want to be like everyone else. But I just get to sore and tired. Today my doctor suggest getting a wheel chair, but I dont want one. I want to walk! I want to dance! And I want to eat without getting all these pains! Mummy said its ok we can take each day as it comes. I will have good days and bad days... But they will all be great singing and dancing days. Well my friends, I am off to play with my sisters. Remember to sprinkle your sparkle where ever you go. Loads of huggles and smooches. Always Miss Lilly. X
Posted on: Tue, 13 Jan 2015 06:33:54 +0000
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