The video by itself it the video from that morning.
My mom took Lily to her Rheumy. By that time a few days later, Lily was pretty much back to "normal". They were concerned with the video (supposedly) but there was nothing wrong with Lily. There was no explanation as to why her body did what it did. It was hard not being there. Over the phone, I was frustrated. I often feel that most people don't take Lily's physical issues seriously because they don't see them. I feel that way about my mom too who doesn't see Lily much during the course of the day. Just because she is fine for a little bit doesn't mean all the other times she is fine. So frustrating!!!! Lily is the typical "but you don't look sick" kid. Unless you were paying attention, the majority of the time she does look "normal". But if you start to look, you can see her not use her hands and fingers, you see her knees and ankles buckling, you see her limp, you hear her complain, you see her rest and rub her owies. you just see what I see. Am I more sensitive, absolutely.
March was a funky month for her. She was in what most people call a "flare-up". She started having low grade fevers again, stiffness in the morning, days of laying in bed for several hours, warm joints, hives, red hot splotches on her body etc.... I gave her a few short rounds of Naprosyn, that didn't seem to do much. All the rain we had really affected her. It's amazing how rain can make a really mobile child less mobile.
The past 2 weeks Lily has been in heaven. My niece, Delaney, has been here. The last time Delaney saw Lily was when she was hospitalized over New Years. It really bothered Delaney to see Lily like that. She needed to see her normal and happy. Lily LOVES Delaney. We went shopping, went to the beach with another JA family, shopped some more, played at home a lot and pretty much drove me crazy!!!
The next few weeks are going to be crazy. Lily has an appointment with Dr. Boles at Children's in Los Angeles. He is a genetics specialist. We are trying to figure out all the other stuff going on with her. Then she sees Dr. Gopen again (both ear tubes fell out and her speech is still way below normal), then her Rheumy. I am also trying to raise as much money and awareness for Juvenile Arthritis, through fundraisers and the annual walk.
Please feel free to ask any questions.
I hope to update more regularly:)