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.

Wednesday, April 27, 2011

The story we tell...

Wow… I know everyone says this after a posting hiatus, but I really had no idea it had been this long. I probably won’t get into all of the small details of the last five months, but I will surely get you all up to speed on progress… you’ll question the sanity and purpose of calling it progress once I list the current meds, but trust me when I tell you that she is in the right hands... There is no cure, only results of research & she is doing amazing.

I think that the difference between mourning and gratitude is all in the story we tell ourselves... don't get me wrong, there is a time, place and need for both, but the goal is to spend the majority of our time in the latter of the two right? Easier said than done some days, absolutely, but when you have this crazy cute girl smiling and giggling back at you, it's pretty hard not to be humbled and have your attitude put in check.

I wanted to share this story with you (I did not write it), maybe some of you have seen it already… depending on the day, it will put a grin on your face, or bring out the tears you’ve been trying to hide, even sometimes from yourself. It is so good! And explains how I feel, SO WELL.

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

It's amazing... this is just so true. If the trip to Holland did not come with so many dangerous side-effects and pain for my baby girl, I'm confident I'm enjoying Holland much more than I could have ever known how to appreciate Italy :)

Here is the update...

Taylor had a skin flare up in the middle of January… it was caught early and treated aggressively. She did not lose strength or hike up any muscle enzymes, but we did learn that tapering off the steroids is not nearly as clear cut for her as they had initially hoped/thought… so she is back on the IVIG day long infusions down in Chicago; this month was her 4th of 6 rounds. This is the large 6 hour dose of human IgG anti-bodies to help boost, repair her natural defenses to infection while her immune system is being constantly pounded on by other anti-inflammatory and immune suppressing meds. While we'll miss Nurse Celest (because she is such a sweet and caring soul)...we are glad to report that she completed her final in-home IV steroid infusion yesterday.

She is still on folic acid, previcade, calcium, multi-vitamins, oral steroid (prednisolone) and weekly methotrexate injections given at home… but they have added Plaquenil (specifically for the skin reaction) and CellCept. The addition of CellCept was admittedly a little hard to accept, ok a lot. It’s a transplant patient drug, it' just a lot to wrap my head around.

The taper from steroids is the beast… kick starting the adrenal glands to produce their own natural steroids without causing that flare. It will come, it’s finding the right combination for Taylor. In Dec of 2009 it was too hard for her to climb 3 single stairs and it was really her arms pulling her up anyhow and now she’s doing handstands. Remission is not a question of “if” but instead a statement of “when.”

Think I’ve covered most of it… doesn’t she look amazing??? I intentionally peppered in pictures to help shrug off the crappiness of the situation. Love to you all!!! And thank you for your continued thoughts, prayers, and well wishes - we are truly blessed!!!

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