Sorry it’s been such a long time for me to get an update out on Harlie. She’s been keeping me very busy these days!  I was going through some of my notes I’ve made from the last year and a half. I started to reflect on everything.  I am SO amazed and grateful for all the progress she has made and for everything she has overcome. Harlie went from a happy, energetic teenager, a good student and an excellent athlete to a very, very sick little girl, with no answers as to why, almost over night.  We came close to losing her numerous times.  She had  hundreds of X-rays, MRIs and blood tests during her hospital stay. Some of her treatments were very painful.

However, she continues to fight Juvenile dermatomyositis (JDM) and get the life she once had back.

She is not giving up on her dream to play softball again and has been going to open gyms regularly. She is pushing herself to get stronger and get her muscle back that the disease took from her. When I watch her throw a softball now, it brings tears to my eyes ever time. Since it was only less than a year ago that her shoulders were sinking in.  I asked why and they said, “The disease had made her lose so much muscle and that is what hold the arm in the socket.”

Her shoulders were literally falling out of the socket:-(

It wasn’t that long ago that she needed her wheelchair to get around. And now,  she is able to walk fast:-)

No more g-tube!  She has been able to eat whatever she wants again! She said that after going 6 months without being able to eat or drink, she will always have a snack with her:)  lol

Her blood levels are looking good!

No more open sores on her knuckles or body:-)

Her hair is growing back thick and fast!

 Her treatment on Thursday went well and her doctor thinks the disease is controlled for the time-being. So, we are decreasing her treatments to once a month. We are also stopping methotrexate because liver enzymes are very high.  We are hoping those levels will go down. I’m more than happy to get her off of the Meds and on lower steroids. As we all know, the drugs that can help for awhile can also cause serious side effects.

We are hoping to get her back in school soon for a couple of days a week until she can handle more. She is looking forward to being a normal teenager again.

She is also going to be trying out for the softball team in a couple of weeks!  I wasn’t sure if this day would ever come again. It wasn’t that long ago that we would wake up several times a night just to help her turn or move her head.

She is so determined and she has such FIGHT in her.

I’m sure whatever she does, she will be amazing at it.

She is our miracle child that has overcome so much!  She is beating the odds every single day with hard work and all your support, love and prayers??????

Thank you!