Second Anniversary Eve...

For whatever reason, I can’t figure out what I want to say about it & can’t put a finger on how to feel in this moment. It was two years ago tonight that Taylor was admitted to Children’s in Milwaukee… we were in the ER for hours - they knew they wanted to admit her… they had no idea what floor to put her on because they had no clue what she could possibly have.

What I didn’t realize was that my sister Amy was on her way as well and showed up minutes after Taylor was put in an ER room, just to be there so we didn’t have to face it alone – and stayed until Taylor was brought upstairs… and then was back the next morning with a monster sized mocha coffee and chocolate covered espresso beans :) just minutes after visiting hours began and was the voice telling me and Taylor it was all going to be ok when the team of Dr.’s came in to explain the new normal called Dermatomyositis (JDM)…

Tonight I am grateful for family and friends, I can’t explain what ‘just being there’ meant to us… I am insanely grateful for the Rheumatology Dept at Children’s hospital in Milwaukee… I can still picture all of your faces… you diagnosed an extremely rare disease in less than 24 hours that many parents are left agonizing over for 3-12 months +, nothing short of Angels watching over her that week… and most of all I am grateful and blessed to be called mom by this sweet little 7 year old!! I love you honey :)

That's it for now... I haven't talked much about the real happenings before and I've been shutting certain memories out all this time because they can be painful in about 500 different ways, but there was a mountain of good things intertwined in the events of the last two years... and it would be a shame if they were lost or discounted.

It's just crazy... I came across this quote in an email, I've heard it before, but this time it really hit me. And it is spoken by one of my all time favorites...

"The walls we build around us to keep out sadness also keep out the joy." --Jim Rohn

Huh, I was reflecting on this quote all week for an entirely different reason, but it was really meant for me too.

Happy Monday everyone!! It's going to be a great week!!

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!!!

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!