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, July 21, 2010

The Big Chicago Visit!!

Last week we made the trip down to Children’s Memorial Hospital to make her rounds for the month :) On Tuesday she saw Dr. Janiki…the Orthopedic surgeon who drained the staph infection in March…just one final check before they release her…again, we sat longer in the waiting room than we actually saw the good Dr., oh well, I guess its protocol.

We spent the afternoon with Aunt Lisa, who lives in the big city, and went to Navy Pier, ate some McDonalds, and put together a rather expensive, but totally worth it, colorful and adorable bear at Build-a-Bear…all things which can be done back home…but just seems so much cooler to do out of town when you’re six years old. We spent the night playing Mario Brothers on Wii, Taylor had a blast and I think Lisa was happy to have someone to play with too! They own a second story condo with a balcony, which entertained us for quite a while as well…Taylor brought the Kitty squirt gun outside and a few times I had to catch her when people in nice business suites were walking by because she was aiming at the cars parked on the street…I can’t tell you how much fun we are having enjoying her new found health…her deep belly giggle is back…I hate to say it, but I had forgotten a little what it sounded like, and part of me thinks we were defending ourselves from those memories a little because it just hurt so bad to look back at the pieces of her that we were missing so much. Life is just so good now!

This is a pretty emotional journal to write as I’m sure it is to read because of the rollercoaster of emotions that our families and friends have been through with us over the last 7 short, but excruciating long months…it was almost surreal when Dr. Curran looked at us only a few short minutes after being in the room and says “it’s time to start getting you off of these drugs…” Oh my God, you just pinch yourself. I say “really?” almost in disbelief…well actually it was disbelief. We knew how good things were going, but you still protect yourself from disappointment…

Dr. Curran examined her and proceeded to exclaim that there really isn’t any sign of the disease left in her body…she joked with Taylor that she had been lifting weights since they had seen her last because she had gotten so strong. Taylor just giggled…I love that giggle. If you remember the “pitting” in her eye lids (the dark creases in the corners), they are faded and no longer red, a little brown, but they may scar a little. She had inflammation in the roof of her mouth and gums that is now non-existent. The only things left are the cushingoid puffiness in her cheeks…and a cute little hairy forehead from the steroids…which will all leave as we continue the big taper!!!

So the awesome news is that her IV steroid is backed off to every other week…for 3 doses and then every three weeks for just 2 doses…and then it’s DONE!!! She will then be backed off the oral steroids (she’s on a daily maintenance dose), and then the methotrexate shot that she still gets weekly. Just amazing that we are talking about these things already…this little girl has been healing herself.

She got her second dose of IVIG on Wednesday as well, an 8:30 appointment that was finished around 4…she’s such a trooper…for those of you that know her infatuation with movies…meaning that when she finds one she likes, we watch it over and over and over. Wednesday’s selection was “Cloudy with a Chance of Meatballs” I lost track of how many times we watched it.

Two more doses of IVIG left to go… then they will retest her Igg levels to see if they are stable…hopefully that will be it! She didn’t have any infections when she was a toddler, so they thinking that she isn’t naturally deficient, just suppressed from the steroids.

Physical therapy is backed down to every other week as well…she’s getting so strong and we were told “it’s time to let her be a kid again.”

Words can’t explain…We second that motion!!! Let the taper begin!!!

Friday, July 2, 2010

Vote, Vote, and Vote again :)

Hey there everyone... this post is for CureJM!!! We have to tell you, if we haven't already made it clear, that without CureJM, we would not have found her specialists down in Chicago that have completely turned around her course of treatment and have changed Taylor's situation for the best!! We just can't put into words what the support and information has meant to us and other JDM famlies!

Here's the scoop...every month, Pepsi is awarding $250K to 2 organizations that can stir up the most votes in the month of July...you can vote everyday...everyone in your house hold can vote everyday, just as long as they are over 13!

Cure JM is ranked 17 at this time...yesterday it was at 35!!!!!!! Trust that every single vote will count and every single vote gets the organization closer to $250K that will move mountains to fund research for a cure!!!

Thank you, thank you, thank you for all of your help!