January 2009

January 1st Thursday- Today Eric and I bought Bri her first pink tricycle. She was so cute trying to ride on it-she doesn't steer to great but she can keep her feet on the pedals for at least two rotations! She has a cute little pink helmet too that she actually loves to wear.
January 4th Sunday- Today Suzy (Grandma:)) noticed that Bri's left middle finger is really big, so we will have to keep an eye on her finger now. It's so funny because children fall, bruise themselves or stub their toes or their fingers, but with Bri a swollen finger isn't just something you blow off...you have to keep a watchful eye on every little itty bitty joint, write the first notice of swelling in your calendar and keep track day by day of what happens.
January 5th Monday- Bri's right ankle is still swollen. So typically you have to wait 5-6 weeks with a swollen joint for it to be JRA. Today I also noticed her left big toe is huge! Much bigger and swollen than her right big toe. So we will now keep an eye on her toe as well! She was pretty irritable off and on today, and again I have been holding her all day! She loves going in the sling though and hey whatever works to free up both my arms so I can still hold her :)
January 10th Saturday- Eric and I took Alex, Alyssa, Derek and David to Supercross where of course Eric and I watched the Cardinals play on the big screen in the playoff game vs. Carolina Panthers. So the kids had a blast and so did we :) Bri stayed with Grandma and Papa and of course had fun :)). Today I also noticed Bri's left arm must be soar because I bent her arm to put her shirt on and she pulled her arm down and said "ahh" as if it hurt her to bend her arm. She has an appt. with her Rheum on the 20th so this is another joint to tell him about and keep an eye on.
January 20th Tuesday- 9:00am to the Rheum. So I told him about Bri's left middle finger, her right ankle, her left big toe, her left arm possibly it's her elbow and now also her right middle finger. He checked all her bodily joints especially these and now she has what is called Polyarticular Arthritis. This is when JRA affects five or more joints in which girls are affected more frequently than boys. This subtype typically affects the same joints on both sides of the body...oh and he also said that not only is it her right ankle but her left as well! But still only her left big toe which when she walks she doesn't want to have pressure on the toe (think about this...try and walk with no pressure on your big toe. When Bri walks she walks awkward because she is trying to avoid putting the pressure on it). So not to sound scary but now with two locations of particular concern in children with polyarticular arthritis are the temporomandibular joint (TMJ) and the cervical spine (neck). TMJ arthritis can lead tolimited jaw opening becasue of pain and discomfort when chewing. So this is why we are constantly watching every single solitary thing.
So now the Rheum said "you have three choices: 1) keep her just on the naproxen and see what happens with these other affected joints 2) get the steroid injections again in these affected joints 3) put her on Methotrexate either oral or by injection. So we didn't want to make a quick decision about this but we knew it would have to be more than just the naproxen to help. She has been on this and so far it keeps spreading. So injections of methotrexate or back to the hospital for steroid injections in the joints. Anyway...alot of thought alot of talk alot to read about as far as the methotrexate goes. So I went to the forums/blogs on arthritis.org to see what other families have experienced. And of course with JRA every single person is affected in their own way, what works for one child might not be the same for another.