A day in the life of a chronic illness. The chronic part, I forget once in a while.

Jacob had appointments today in Boston with the orthopedic and the rheumatologist. He still continues to see the rheumatologist every 3 months and the orthopedic every 6 months.

We went in today thinking it was going to be just a routine appointment. Jacob has been feeling good at home and has not really complained about anything. Everything seemed to be holding steady. When we see the rheumatologist and the orthopedic it is so convienient. They share the same spot in the hospital. We arrived there and went immediately to xray for xrays of his leg lengths and his spine. After the films we went right in to see the rheum. The nurse took the usual vital signs and we talked about CARRA. We were able to finally sign up for the registry.
There has been talk for years about setting up a registry that will allow for a group of kids to be followed for research for treatment and a cure for this disease. We are happy to be part of this!
If any of you have not been approached by your child's rheumatologist please ask about this!

When the rheumatologist came in she asked Jacob how he was feeling any pain, problems stiffness etc. Jacob is quite the character answering her. He always brings a laugh. He denied any problems. So she looked over his joints. She found something new today. Yup new. Haven't had any issues with this joint yet. His left hip. It was stiff. She also noted that the toes which have been swollen for quite sometime, were still swollen. Jacob continued to deny any trouble with the joint. She decided to start with an xray to rule out bone changes here. So off we went to xray again. I think he has had enough radiation for a while now.

After the xray we went in to see the orthopedic. The xrays that were taken of his spine and leg lengths have remained stable. He still has scoliosis but it is still within an acceptable range. His leg lengths were about 7mm off. ( I think) So very minimal. Next we moved on to the hip. (the new joint, in case I didn't mention that) He was able to feel the tightness and said we may want to consider doing a joint injection. He looked at his toes as well and I asked about how the 2 toes do not bend much at all. He said he could feel the "nodules". He was concerned that the arthritis was active again. He left the room and consulted with the rheumatologist again. When he left the room Jacob was very upset. He kind of put his head down and quietly cried. He remembers all too well being put to sleep for these procedures. He wanted no part of it again. I think now that he is getting older this is tougher for me as well. He understands everything going on. He knew that hearing the arthritis was active again was not good. The doctor came back in the room and said that they discussed what to do at this point and they both agreed to leave the hip alone. Jacob is not in any pain, and he doesn't seem to be affected by it.

We return to the rheumatologist in 3 months. The chronic disease is still insisting on being chronic. Maybe one day it will decide to stay away.

Spreading awareness!!

One of the biggest concerns, we as parents have regarding Juvenile Arthritis and Uveitis is the lack of awareness. For a disease that affects more than 300,000 kids, not to many people have heard of it. We are always looking to spread awareness. I was just on Dr. Foster's site and came across someone spreading awareness. Jay Jay French from the band Twisted Sister is raising awareness. His daughter at 6 years old was diagnosed with uveitis. She has traveled the road like a lot of our kids. You can read about Jay Jay's mission and fundraising to support this cause. His project is called The Pinkburst Project. Click on it and see what he has planned! Go Jay Jay spread awareness.