Chicago Info

It was a whirlwind trip this time and we barely had time to sit back and relax. It was GO GO GO the entire trip. We are back home and back to our "normal" routine. Her appointment went well and she grew 2 inches!! That is a big deal for kiddos who are on Prednisone or any long-term steroids, as they stunt the growth. As soon as Lola walked in to clinic, everyone commented on how much taller she was! Dr. Pachman was so pleased at how well she looked. We met the new the PA and a few other new faces. I sure hope Doc gets some more help, she is so swamped with JDM cases. There are some concerns that she wants to address, as Allorah is complaining of trouble swallowing food (dysphagia), which is something that is common with the progression of JDM, that concerns Dr. Pachman very much so she will need to have a swallowing study when we come back in January. She also has to have another pulmonary function test to follow the slight pulmonary fibrosis that she has in her lungs. That will be done in January as well as a consult with the pulmonologist that is Dr. P's associate. So far her PFT's have come back normal so lets keep praying for that. She is also scheduled for a bone density scan (DEXA) to help check and follow her osteopenia, that she has developed from the long term use of Prednisone. She has a lump on her chest that she is sending us for scans to check on. It may be calcinosis or a possible cyst, but whatever it is, it can be removed. Her muscle strength is about the same but her range of motion is worse. Her flexibility is tight and less so she stressed the need for her to increase her exercises and therapy at home or they will be putting her back in PT a few times a week. She was not thrilled about that, but either she takes this serious or she will hinder her ability to walk right and have proper posture and have increased pain. The whole gamut of labs were drawn and we should be having those back in about 2 weeks. So its the waiting game until then. We are hoping that we can continue to decrease her Prednisone and possibly the MTX as well. I hate that shot!!
We travel back at the end of January and hopefully by then she will be more flexible and better labs, so I'm crossing my fingers!!