You would never know...

Taylor is back in full action with plenty of energy! You would never know what she has been through this month just by the looks of her. Don’t get me wrong, she’s not at 100%, but she is sure at the 75% that she was before the staph infection took over her mobility.

She came home from the hospital on Thursday March 11th…The following Tuesday, she had her first physical therapy, that night she tried walking without her walker… and hasn’t used it since! Her therapist was so happy, I think she expected was expecting to have regression from past progress, and that didn’t happen at all. Taylor didn’t lose any range of motion in her hip or knee, and actually maintained all of her trunk (core) strength…this is a positive sign that Taylor is getting a hold of her disease, and not the other way around. You should see how strong her upper body is getting!

When she was hospitalized, the Dr.’s showed me the MRI of her leg, they showed me what healthy muscle tissue is supposed to look like, and there wasn’t a strand of it in these images…I asked “Wow! Is all that inflammation from the infection?” and the answer was quickly “no.” All of her muscles are still inflamed from the initial flare of the dermatomyositis last fall. What a slap of reality in the face…all of the progress that she’s made. The specialist told me that’s why they always figure two years minimum of drug therapy…nice, Milwaukee Children’s told us a year, that was a hard lump to swallow.

I digress… the markers in her blood levels are telling us that her body is no longer attacking her, but there is a lot of progress to be made yet on rebuilding the damaged tissue, but we’ve turned the corner… and that is the awesome part!!! For those of you that see her, but not as often as we do, don’t be sad…she is doing incredible! This is going to be a long process, so please don’t be let down, or let her see it in your face – compared to a few short months ago when she didn’t want to walk at all, and couldn’t stay awake later than 5 p.m. she is truly on her way to full strength and health!

That Friday we were down to see the surgeon for a follow up appointment…maybe it’s just me, but I think that surgeon’s beat to a different drum than most Dr.’s. I guess I had been expecting a little more out of that appointment; we sat in the waiting room for 10X the time we saw him. I guess you don’t need people skills because most of your encounters are when your patients are sleeping…”she’s fine” and “looks great” were his comments. Ok, guess that’s good enough for me. The incisions do look great in my mind; they never wept and aren’t sore. So we'll be back down there next month...for him to say the same.

This past Monday she went back to school…we were thinking about ½ days to start, but after she went to Sunday school the day before, and climbed 2 flights of stairs that day as well… she was ready to go! In my opinion, she feels her healthiest when in her “normal” schedule and routine…Taylor doesn’t like special treatment; her biggest motivation for wanting to walk was going back to school without her walker – and she succeeded!

Current – she’s still getting the anti-biotic 3X’s daily thru the PICC line, but the countdown is on…one week from today, we go down to Chicago, and they’ll let us know if she’s in the clear…and what the next course of action will be. Shawn and I have decided to move her treatment down to the Chicago Rheumatology Clinic...can’t wait to hear what they have to say next Wednesday!