Wednesday, February 25, 2009

Polyarticular Juvenile Rheumatoid Arthritis

Wow what a month, we went from almost doing eye surgery (getting two other opinions, saying they would not do it, so we are holding off, at least for now) to finding out our daughter has arthritis. Well we often commented on her running a little funny, or how her ankles, wrists, fingers seemed to be bigger than normal, (but we figured it was all normal and just her) And of course the whole reason we found it was her swollen knee(hence the sedation clip in last post) Come to find out it is a much more serious condition. So after much talking, praying, fasting, and i guess just accepting it, we are moving forward and hope all will work out for the best. We are putting her in a study that is going on around the country in hopes of attacking the autoimmune illness and being in remission within a year. They new evidence or what they believe is that it has not been treated aggressively in the past, so it lingers too long and causes damage to the cartilage and joints. So they want to be very aggressive from the start, JUST HOPE IT WORKS! anyway we will do monthly visits, blood work, and weekly injections and daily meds. Which has been the hardest to accept that i will have to give and do painful things to my mostly innocent 3 year old. She is tough and we will make it , but any prayers you want to throw our way are welcome!

Monday, February 9, 2009

Ode to Lizzy

I figure with a new baby coming soon, our lives will change and of course for the better, as we learn and grow in different ways, however i thought i'd give a shout out to my "special girl." Even though there have been definite rough patches over the last 3 years, i have learned so much from my 'sweetie pie.' She is just a doll, so eager, and loving. She just makes me smile!
The latest has been her willingness to help. Which of course i want to encourage even though it takes longer or is a bit inconvenient, i know the day will come when she won't want to help. She has been helping with yard work, dishes, painting, and anything else she can get her hands on. The other day i just didn't want to do the dishes, but she did, so she moved the rug out of the way, pushed a chair over and turned the water on to do it herself!







Over the last couple months we have been watching lizzy's knee and wondering if something was wrong, she never complained of pain or never seemed to favor it, but her left knee seemed bigger than her right. So we finally took her in this week and found she had extra fluid in there, they drained it and she is doing fine, but we have a follow up thursday and hope the labwork comes back normal. They say it could be from a sprain or twist, or infection. don't really know right now. But they had to give her some meds to drain the fluid and it made her very loopy. Which actually was very funny to watch. within 5 mins of taking it she was laughing hysterically and falling asleep not able to sit up. The funny part was while we were waiting they said to go get her blood work, so we had to do a urine sample. While i was holding her limp body on the toliet, Cj was trying to catch from the back. it took a bit, but we were successful, just glad she had to go.

Here is a video of us at the dr:


video

Besides this last week, we had beautiful 80 degree weather and took advantage. Lizzy loved playing in the sand at the beach and Mom and Dad were able to relax a bit. one of those wonderful days!