Please check out this blog post from a JDM dad:
Really, really amazing. Made me cry (a lot) and does a great job of expressing some of the emotions inherent to dealing with this disease.
I'm preparing to take Mielle to another appointment in Chicago this week. I really can't believe it's been over 4 months already since the last trip. The rapid passage of time is beginning to freak me out! Mielle is continuing to do well, as far as I can tell (the pinkness I was noticing a while back didn't seem to amount to anything, thank goodness), and her Stanford doc is really pleased with her progress. So I'm hopeful that the news will be good this week, but... it's nerve-wracking nonetheless.
After successfully reducing her methotrexate dose so that it is more in line with her current weight (she has lost a lot of her steroid weight but the dose of the mtx had never been adjusted for that), we resumed tapering her prednisone. She's now on 3 mg/day (as opposed to 30 mg/day at the beginning). I am so grateful and relieved to have her on a lower dose of this drug; she still suffers some side effects, but it is nothing compared to how unbearable things were, for her and for us, at the higher dose. My understanding is that if all continues to go well, we will keep on tapering that drug until she is OFF it. I suppose I will find out more about that possibility at the appointment this week. Fingers and toes crossed. It would be quite a milestone to have her finally off the steroid, after more than 18 months.
Lucien is such a little walker now; he seems to consider it his job to walk laps around and around the house (with a big happy grin) from morning til night, picking things up and putting them down in random places as he goes. Although he is still significantly delayed in all areas of his development, he is progressing in other areas, too - he has a lot more words now, and mimics us all the time. (He recently learned "hungry" and he really likes that word a lot!) We recently added a new therapy to his repetoire - Occupational Therapy, which focuses on fine motor skills (stuff he does with his hands). It keeps us hopping to maintain his schedule of services, but we know that all the intervention he's receiving is critical to the progress that we've seen, and we're so grateful that it is available to him.
Mr. Delightful continues to explore his emerging stinky-two-year-old side, but he does it in such an adorable and endearing way that truly, it just makes him that much more delightful. Except when he looks deeply into my eyes, grabs a handful of my hair, and tugs HARD while simultaneously telling me "NO!". That is actually really, really annoying. Still, I'm already thinking about how much I'll miss him when we are in Chicago.
On the bright side, as far as our trip goes, I'm going to have the chance to see some old, dear friends - Nancy Poozy, Kristin, and Amy. Amy is flying to Chicago to meet us on Wednesday, after M's appointment, and we'll have until Saturday to play! Nancy and Kristin are driving down from Milwaukee on Thursday to spend the day with us. I am very, very excited to see them!
Wish us luck at our appointment.