Thursday, September 15, 2011

Another appt coming up!

In about two weeks, we are heading back to Cincinnati for an appointment with Wesley's Rheumatologist. I am anxious! Wesley just recently got over a nasty virus that plagued him for 5 days, in which, caused a bad flare up in his joints. I put my hands over his knees and I could feel the heat just pouring off his little legs. Every step that he took, he tried to do carefully so that he didn't cause himself that much more pain. It's a terrible thing to see your child suffering like that knowing that there isn't much you can do to allieviate that for him. He got through it though and overcame it and is now on the mend and back to all smiles! I am SO frustrated with this disease! I want so badly for there to be a cure! It haunts me when I think of Wesley's future and his quality of life. The meds he's on now are toxic to his body and the majority of them can cause cancer, renal failure and liver failure... but if he isn't medicated, there'd be no way that my sweet little boy could even begin to try to live a normal life. The arthritis has already caused excessive bone growth and calcium build up in his joints and his legs are "in-turning." It's crazy how quickly this disease progresses. Sometimes I get so frustrated that there's so much attention on other diseases and hardly any on arthritis. Our children are just as important and just as desperate for a cure! I take it all in stride though and I make sure to not take each day for granted. I am so thankful that we took him to Cincinnati Children's Hospital for care. The staff and doctors there are amazing! I can't even put into words my gratitude for them! When he was sick last week, they ordered a battery of tests and THEY called every day for updates on him. They treat him not as just a patient, but like a child of their own and that says A LOT! His Rheumatologist is so good at what he does that he flies in every Friday clear from Baltimore, MD where he works at John Hopkins during the week for his expertise! I am just in awe of him and the impact that he is making on Wesley's quality of life. His next appt is on Sept 30th, so I'll write more afterwards! Wish us luck!!

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