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.

Thursday, June 17, 2010

Lots of updates...she's been busy

The PICC line….is out! It was removed on May 27th. Taylor absolutely floored the doctors at her last visit. They backed her IV steroids off from twice weekly down to once. After the Dr.’s left the room, Nurse Melanie comes tearing into the room exclaiming “Once a week, are you kidding me? You don’t understand, it just doesn’t ever happen this quick!” And all we could do is smile, and I thought to myself…it sure does for my Taylor. It doesn’t get any sweeter!

So now, Nurse Collette comes once a week to give Taylor her dose, the only need for an in home nurse before was to change the PICC line dressing. First step is to put on the numbing cream, wait, start IV and then sit and watch a movie for 45 minutes to an hour…all the while Taylor tells her the random events of her week, all things relative, it is quite an enjoyable time. Sometimes I think we miss out on these important conversations in our loved ones lives when we don’t take the time out of our purposefully crazy busy schedules… IV comes out…and on with our evening. No more showering with a covered arm, no more tears when swimming comes into a conversation… speaking of swimming…

Taylor has been granted a wish from the Make-a-Wish foundation! The same night that the PICC line came out, two “Wish Makers” came to visit. I had referred Taylor after the extended stay at Children’s in Chicago…That was a tough phone call to make, but I was so excited to know, that Taylor could have something special of her own, for everything this little girl has been through. We are just blown away by their generosity! They came equipped for the visit with balloons and gifts for her…Taylor did not decide what her wish would be until the next morning…she hopped out of bed and declared, “Mom, I know what my wish is…I want a swimming pool!” and she has never wavered since. This wish is especially special, because we didn’t tell anyone she would be granted one and Shawn and I didn’t make any suggestions for her, we wanted her to dig down deep, dream big, and figure out what she really, really wanted.

The project is off and running, the Doctors have approved the wish, we’re in the process of getting the permits…and then they’ll get started! They want to get the project going as soon as possible so that she will have part of the summer yet to enjoy it. It will be a 24’ round above ground pool and will include a heater, chemicals for the first season, the filter and vacuum, solar cover, and winter cover. I just can’t believe it!

More Updates… They did more testing on her immune system during the last visit, they had run all of these tests in her first visit, but wanted to make sure the results weren’t being skewed by the rampant staph infection in her leg. They tested her Igg levels this last visit (and I apologize to any of my nursing friends and relatives, I hope I don’t slaughter the terminology too much here, I’ve understood most everything up until now, but I’m still struggling to wrap my head around this one). There are 4 tiers of igg in our blood, her total levels are at a 450, the low end of the acceptable range is 600. Here’s a definition for you: Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections. Well hers are low, still in a good level that she has response to infection, just not enough for their liking, she is more prone to infections. As she is weaned off the immune suppressing drugs, the last thing she needs is another infection coming in and stimulating the response that started this whole disease rollercoaster.

She has now started an IVIG treatment…they take these specific antibodies out of donated plasma, and IV them into her. Her first infusion was on Monday…a 7 hour process. She did awesome, taking everything in stride, they pre-medicate with Benadryl and Tylenol along with her IV steroids, just to make sure there isn’t a reaction to the IVIG. Not sure how long she will have this done, they will plan at first for one time per month and test the levels each time to only do it for as long as needed.

The thing that I don’t understand is how they are giving her the IVIG and not stimulating her immune system…because remember all of the immune suppressing drugs that she is on…so we’re tricking her immune system not to attack her with the prednisone and methotrexate, but now trying to build her antibodies with the IVIG, and somehow the two do not contradict each other…that’s what I don’t get yet, but I’m fully trusting…she’s doing great.

She can now pull her head completely off the ground and get a shoulder up like she’s trying to do a sit up, pretty pretty awesome!

Sorry this is a lengthy one…but lots has been going on the last month.

Walk for Taylor… Taylor’s incredible teacher, Mrs. Wackwitz, coordinated a fundraiser for CureJM. She wanted to do something for Taylor, to give her and her classmates a memory of their year together, and I’m sure the walk exceeded her expectations! The 4K and 5K classes walked a large block around the schools in honor of Taylor. Most of them wore blue, the color for CureJM, a lot of Parents came out to join us…there was a second grade class that raised money as well because they were so touched by her story. A third grade class came over in the morning and gave $171! The teacher had told them that she would match whatever they raised! From what I had heard, several students got together and had a lemonade stand the weekend before for the Memorial Day parade, and raised $12! CureJM donated rubber blue bracelets that say “CureJM” to every participant. And all together “Walk for Taylor” raised over $2,080 for CureJM, which funds programs for research and support for families of Juvenile Dermatomyositis. The "Thank You's" may sound like a broken record, but we cannot express it enough! What a memory for Taylor… Thank you so much!