Sunday, May 30, 2010

Update on the last 2 appointments

So I dont even know where to begin, there is so much to say! We had quite the week last week. There were a couple of days where Jackson would not even walk because his knee hurt so bad, he would just yell for me when he wanted to be carried to a different room. He is now taking a high dose of ibprofen 3x a day if it doesn't seem to work for the pain and swelling we will have to try a stronger med which is something we would like to stay away from because the prescriptions meds are harder on the body and one of them includes injections that we would do at home. But so far the ibprofen has been good for pain control but not the swelling. As of right now his right knee, left ankle and one of his left toes are swollen. All last week Jackson would wake up frequently thru out the night crying in pain, it was hard to see him like that and the lack of sleep was not fun! Since the increase in ibprofen he has slept all night in his own bed except 1 which has been a treat for us!

We had 2 doctor appts in Minneapolis last Wednesday, one with the pediatric Opthalmolgist and one with the pediatric rheumatolgist. We saw the rheumatolgist first, he did a whole history on Jackson and our families and then did a exam. He did confirm the diagnois they had already thought, Pauciarticular JRA. JRA is nothing like the adult form of arthritis, it is completely different. It is a autoimmune disease and there is no cure for it. The cause of JRA is unknown but some research indicates that it may be in the genes. His knee is the worst joint right now, it is very swollen and squishy when you touch it. It is filled with fluid, feels kinda gross. This fluid will eat away at cartilage and bone and disturb normal growth of the bones. So I am kind of not like the idea that we don't see the rheumatolgist for 6 weeks, if the ibprofen doesn't bring the swelling down I don't like the idea of letting it go that long before seeing the doctor to try a different med. He did give me a great book that he edited called ''Raising a Child with Arthritis.'' Its been a great book for me to learn more about the disease. The rheumatolgist also wants Jackson to have xrays and more blood work done in 2 weeks. He did have some blood work done last Monday and his white blood cell count was lower than normal.

We saw the opthamalogist next for his uveitis and that appointment went well they only saw 2 cells in his left eye which is less than it was 3 weeks ago. But because the cells aren't completely gone we have to continue with the steriod drops. We can hopefully be done with this drop after our next appointment in 6 weeks because prolonged use can actually cause cataract. But not treating uveitis can cause him to go blind so if his eyes are clear of cells in 6 weeks we can go down to see the opthmalogist every 12 weeks.
This has been very emtionally hard for me and I try to tell myself everday that thank god he doesn't have a tumor or some terminal disease but I still wish he didn't have to go thru all of this! It breaks my heart, every parent just wants there child to be healthy and normal and to know your child will have to live with a disease the rest of his life his hard. There is a quote in my book from another mother of a child with JRA that really sums up some of the feelings you have as a parent. ''Sometimes when I am alone, I cannot help but think about what it must be like to start a life with arthritis. And to never know a life, thus far, without pain.''
Yesterday was Jackson's ''Papa'' funeral, which was very hard. He will be missed so much but we are thankful for the bond that him and Jackson had. And we know now he will be always watching over Jackson!
I guess thats it for now. Thank you to those of you who check this site and for your thoughts and prayers. Hopefully we can find the right medication soon and Jackson can be pain free!

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