I need a painting in my house of a racetrack, an oval one. With 5 horses going around the track. This is life! At some point, each of the horses goes into the middle to do their job. One horse keeps running & has to remember to pick up/drop off in the middle & remember which horse goes where.
Can you visualize it? Wouldnt that be a great piece of art? Or would it stress me out to remind me that we just keep running? Or would it be inspiring to know that the more we keep running (literally & figuratively) we grow, we learn, we get stronger... Speaking of running, i need to get on the treadmill after all this scheduling:
Next steps with Miss Tot:
We meet with our Pediatric Rheumatologist on Tuesday (APRIL FOOLS - no not really, but what a wierd day to meet with him when I should be working on my big jokes w/ the girls)!
We are starting the process for Remicade. BEFORE we do that (here comes the horse race):
1. Tomorrow go into pediatrician to do a TB skin test. Need to make sure that she doesnt have a trace of it, didnt have it because going on this major drug can reactivate it & the TB then can run rampid & cause big problems.
2. Monday, go back to ped & get results.
3. Tuesday, take results to ped. rheum.
4. Start the process for Remicade. Its a battle you have to fight with insurance first.
Once the ok is given for Remicade by insurance, Charlotte gets 3 infusions in 6 weeks (at hospital - wow that's heavy hitting).
Then: once a month infusions & this gets adjusted over time.
Asked our ped. ophthalmologist again yesterday about any other cases we could gleen from - she said again, we are her toughest patient. Ryan & I havent decided if we are going to Boston yet to see the eye dr., we are going to discuss with our ped. rheum on Tuesday.
REMICADE is an advanced treatment that has been shown to have substantial benefits in patients with a number of inflammatory disorders involving the immune system. REMICADE targets specific proteins in the body's immune system to help control the development of inflammation, significantly reducing painful symptoms in diseases such as rheumatoid arthritis.
How its given
REMICADE is given by IV infusion, a simple (ha!) process that usually takes about two hours. A healthcare professional administers the treatment in a supervised environment (Emanuel Childrens hospital). You will receive your first dose followed by additional doses at two and six weeks after the first dose. You will then receive a dose every eight weeks. If you have ankylosing spondylitis, you will receive treatment every six weeks.