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, March 24, 2010

You would never know...

Taylor is back in full action with plenty of energy! You would never know what she has been through this month just by the looks of her. Don’t get me wrong, she’s not at 100%, but she is sure at the 75% that she was before the staph infection took over her mobility.

She came home from the hospital on Thursday March 11th…The following Tuesday, she had her first physical therapy, that night she tried walking without her walker… and hasn’t used it since! Her therapist was so happy, I think she expected was expecting to have regression from past progress, and that didn’t happen at all. Taylor didn’t lose any range of motion in her hip or knee, and actually maintained all of her trunk (core) strength…this is a positive sign that Taylor is getting a hold of her disease, and not the other way around. You should see how strong her upper body is getting!

When she was hospitalized, the Dr.’s showed me the MRI of her leg, they showed me what healthy muscle tissue is supposed to look like, and there wasn’t a strand of it in these images…I asked “Wow! Is all that inflammation from the infection?” and the answer was quickly “no.” All of her muscles are still inflamed from the initial flare of the dermatomyositis last fall. What a slap of reality in the face…all of the progress that she’s made. The specialist told me that’s why they always figure two years minimum of drug therapy…nice, Milwaukee Children’s told us a year, that was a hard lump to swallow.

I digress… the markers in her blood levels are telling us that her body is no longer attacking her, but there is a lot of progress to be made yet on rebuilding the damaged tissue, but we’ve turned the corner… and that is the awesome part!!! For those of you that see her, but not as often as we do, don’t be sad…she is doing incredible! This is going to be a long process, so please don’t be let down, or let her see it in your face – compared to a few short months ago when she didn’t want to walk at all, and couldn’t stay awake later than 5 p.m. she is truly on her way to full strength and health!

That Friday we were down to see the surgeon for a follow up appointment…maybe it’s just me, but I think that surgeon’s beat to a different drum than most Dr.’s. I guess I had been expecting a little more out of that appointment; we sat in the waiting room for 10X the time we saw him. I guess you don’t need people skills because most of your encounters are when your patients are sleeping…”she’s fine” and “looks great” were his comments. Ok, guess that’s good enough for me. The incisions do look great in my mind; they never wept and aren’t sore. So we'll be back down there next month...for him to say the same.

This past Monday she went back to school…we were thinking about ½ days to start, but after she went to Sunday school the day before, and climbed 2 flights of stairs that day as well… she was ready to go! In my opinion, she feels her healthiest when in her “normal” schedule and routine…Taylor doesn’t like special treatment; her biggest motivation for wanting to walk was going back to school without her walker – and she succeeded!

Current – she’s still getting the anti-biotic 3X’s daily thru the PICC line, but the countdown is on…one week from today, we go down to Chicago, and they’ll let us know if she’s in the clear…and what the next course of action will be. Shawn and I have decided to move her treatment down to the Chicago Rheumatology Clinic...can’t wait to hear what they have to say next Wednesday!

Saturday, March 13, 2010

The good and the bad of it...

There's a lot of reason's why I knew I needed to get this site set up for Taylor... it's been 13 weeks since she was diagnosed, and so much has happened during that time. This is going to be my attempt at documenting Taylor's journey, helping her family and friends understand more about the disease and it's impact on Taylor, and to give Taylor something to look back on when she's older...and be proud of the struggles that she's pushed through, all the while bringing smiles and joy to everyone that meets her!

It's been exactly 2 weeks now since Taylor had the first symptoms of the staph infection that would keep her in the hospital for another 8 nights...She woke up that Saturday morning with a sore leg, but continued on about her day, in fact the most energetic I'd seen her in a long time. We even went for a walk outside, it was pretty emotional...but then by Sunday morning, she couldn't put any weight on her right leg. Off to the ER we went, but they sent us home with only lab work done, and a quick diagnosis of "transient synovitis," an inflammation in her hip. By that evening, it was very clear that was a mis-diagnosis.

After waiting for a follow up call from the Rhumetology clinic that never came, I called and asked if we could schedule the suggested MRI..."Oh, it's a good thing you called," the nurse says..."I hadn't heard anything about it." EXCUSE ME??? So I wait for a return call from the nurse, upon which I am told that the Dr. would like to see Taylor in the clinic before scheduling it...he only takes appointments in clinic on Wednesday... for those of you that have ever had a child in pain or that is sick, you know that 2 minutes is too long, much less waiting another two days.

After seeing how miserable she was on Monday afternoon and into the evening, I went right to work on Tuesday morning...I knew that there was a specialist in Chicago that only sees patients with Juvenile Dermatomyositis. I gave them Taylor's history, including the past few days events, and they agreed to see her the next day!!! Dr. Pachman's office sees families that fly in from all over the country, just for her treatment. An instant calming, but also scary feeling came over me. We knew that we were in right place for whatever this was that was attacking her leg, but I felt like her disease had taken a turn, and using the "Dr. Pachman" card, was something that I was hoping we were never going to need to do.

The Good....

All of Taylor's lab work that the Drs. have been watching as markers of her disease activity, including her liver and muscle enzymes...in time I will get into more detail Taylor's history, all came in within the NORMAL ranges... the first time since her diagnosis! I've been reminded by several other JDM mom's and Drs. this is only the tip of the iceberg towards getting her disease activity under control... I just can't help but feel we need to celebrate the small victories along the way!

The Bad...

Because of the nature of JDM, she is taking several immuno-suppressive drugs to stop her immune system from attacking her...so when there is an infection, her body cannot express it as yours and mine can...so the staph infection in her leg basically exploded before they were ever able to diagnose. She never had a cut, or bruise, or entry for the infection, and we'll never know where it came from. She developed a large cavity of infected fluid between two of her leg muscles, that needed to be surgically drained. Her leg was so inflamed, it was almost double the size of her left. She is using a walker to get around right now, but there shouldn't be any residual damage from this infection...just extra PT, and scars that will fade with time. Right now I'm giving her antibiotic 3 times a day thru a PICC line (basically a semi-permanent IV in her arm) for 3 weeks, to make sure the bug is gone. This thing just baffled the Drs. They couldn't believe that it developed where it did, and in the quantity that it did... poor little thing, she was in so much pain.

It won't come as a surprise to you all how brave she was in the hospital... so many nurses told her that there older son's and husbands couldn't have handled it all as well as she did. And what also won't be a shocker is how many friends she made while we were in Chicago... "She's infectious" one of the Drs. told me, she had the nurses giggling. Taylor decided that she was going to walk as far as she could, using her walker, on the day that we left...we came around to the nurses station, and you could see a few glossy eyes, and they all started to cheer...She smiled so big... just amazing, I am just in awe of this little girl.

This is hopefully the last time I'll be writing about a trip home from the hospital...