Taylor was diagnosed with a very rare auto-immune disease called
dermatomyositis on Dec. 13th, 2009; while there is not a cure,
remission is possible with early and aggressive treatment...
This is Taylor's Mission to Remission.

Sunday, January 2, 2011

Saying goodbye to Prednisolone!!!

Where to start... I had a friend point out that it's been since July that I've posted a detailed update... for that I apologize because a few weeks ago I went back and read this blog from the start and wow, I don't want to short anyone of the lessons and appreciation that was picked up along the way. There will be more... I just had to get this one out tonight!

Tomorrow is the last day of oral steroids!

She's been tapering the Predinisolone since October... and now it will join the other retired meds in the cabinet - including the Nystatin, an anti-fungal drug that she swished in her mouth 3 times a day for several months because of thrush caused by the oral steroids (at least it tasted like pineapple and bananas)... it will also join the quickly dropped hydrocodone, prescribed back in March after the surgery to drain the staph infection that exploded in her leg because of the immune-suppressing drugs that are used to control the disease. Going up to the cabinet will also be the Lansoprazole (previcade). The steroids would strip the natural mucus from the stomach lining... so this was used to protect it. She used to go through a big bottle, plus the little one sitting in front of it every month of prednisolone. Pretty amazing and emotional to celebrate that it's done!

I was going to just take a picture of the meds... but she wanted to be in it, along with the Christmas card for some reason... pretty cute anyhow. The yogurt is to sprinkle the previcade on, the one cup is the steroid mixed with OJ and the other is ice water to wash down the caltrate, folic acid and multi-V that are sitting in front of the bottle.

She'll now be down to this:

The folic acid balances her pH... she takes that daily... the little yellow pill. The shot will remain once a week (on Friday's) and the multi-V and caltrate will stay for good... She will stay on the shot for several months to let the disease and her body stay in a holding pattern and keep the disease inactive and quiet while her adrenal glands resume to normal function (remember they were basically inactive from producing natural steroids while receiving the man-made doses...)

I remember the first weeks home from the hospital, I wouldn't let anyone else touch her meds... If I was running late, well guess what, I was late... I could not physically leave the house without checking, and double checking and staring at her meds, just to make sure that I had done it right. I would have to give myself a pep talk some days to leave them on the counter for her. Sometimes when I would get her prednisolone in the cup, and it didn't look right to me... I would pour it back in and re-measure. Getting those meds right was the only thing that I could do for her, and I couldn't let myself screw it up. It was such a helpless and scary place to be... but then look at this little girl. She willingly said ok... every morning. No complaint... at all. She trusted, and looking back - that is just more amazing then I could ever give her credit for. Here honey... I know you can hardly make it ten steps without crying because your legs hurt so bad. I know that you can't pick your head up, much less sit up to go to the bathroom on your own without calling for someone to help you... but take this line up of nasty medicine and try to go about your day...and someday it will all be ok. Ugh... I remember at Christmas last year, you couldn't even touch her shoulder without her breaking down in tears. Her muscles had been disintegrating and hurt so bad to even touch. We didn't know enough about the disease yet at that time, so the fear in our faces had to show, but she pushed on.

Every morning she would sit down to that line up... I could see she was tired and I'd just say "honey... this is just for now, not forever. I know it's hard, but just remember, if you do it now, you won't have to do it as long."

Now we stayed as positive as we could at all times... we didn't even say the word disease in front of her... and mostly refused to even recognize that this bastard had a name, but there was one morning in particular that the fatigue and frustration must have been written on my face and I couldn't, or didn't mask it... this little girl looks at me and says "Mom... this is just for now, I'm not going to be doing this forever you know."

As a parent you say things and hope they stick, sometimes you say things and it's more just so that you can hear and believe them yourself... but when you hear them come back at you in the form of wisdom, you start to believe you're doing ok, or maybe that it's really not in your hands to begin with. Faith, belief and Guardian Angels... and one strong and savvy little six year old - there are no words. I almost feel guilty some days, it doesn't go this well for all of them, sometimes I have to read the words "life-threatening" to truly appreciate the magnitude of healing we've witnesses... I'm just so grateful.

Congratulations baby girl... We're all so proud of you!

Had to stick in a picture of the Christmas tree and Zhu-zhu pets... Doesn't she look amazing? Happy New Year everyone! It's going to be a great one!