Wednesday, April 13, 2011

Yay! Our appointment is here & other business.

We have our appointment today with orthopedics.  Why I am so excited I don't know.  I guess because when he complains about his ankles hurting, I feel bad.  I tell him to hang on just a few more days.  I tell him your appointment is almost here.   I just hope that I don't here, "he will grow out of it" or "sorry, nothing we can do".  Which may be the case.  If it is calcium causing the pain then the only thing we will be able to do is wait and see. I kind of wish we were able to check in with rheumatology as well today.  But our next infusion is the 20th.  Like every month, the closer we get to the infusion, the more and more small signs of inflammation show.  The day before yesterday he woke up with 4 very noticeable broken capillaries in his nail fold of his pointer finger.  It is nothing he hasn't gotten before but once again, it is just a sign that despite good labs, he still is showing process.  He has been on steroids for almost 2 years now.  I know it is not good for him to be one them for so long.  But I wonder if he needs to increase his dose for a little bit.  See if that helps.  

His appointment isn't until the evening so I will update when I get home.

*MAKE A WISH* is here.  This weekend will be the big party!  I will take lots of pictures.  If you live by us and are so inclined, please come and help our family celebrate and thank the Make A Wish Foundation for all their hard work.  We should be done building around Noon.  So any time after that : )  I have to say that I had read someone mention taking advantage of Make A Wish in whatever context.  Some kids with JDM have been denied because a doctor said it is not life threatening.  Doesn't matter.  I even had a relative mention when his wish was granted of being or taking advantage of.  I don't feel that way at all in my heart.  I feel that Gary has been through so much.  He still has so much to go through I'm sure.  Especially with showing signs of potentially having trouble walking.  And I am not saying Gary is going to die, this could turn off and he could be a healthy boy but with the loss of three teenagers over this past year, yes, my son deserves the world.   So thank you for celebrating with us.  I just wanted to get that off my chest.  We are so happy and so excited for him.  It's finally here.

So I am doing a fund raiser.  I am running in the Seattle Rock n Roll Marathon, FULL.  Wooo whoooo.  My second full marathon.  I am going to be selling my body.   UH WHAT!!???  Wait!   NO.    Not like that : )  but it does sound funny to say.   I will be taking donations for a space on my body.  Let me explain.  You know how at the grocery stores they ask if you would like to make a donation to whatever cause when your checking out?  Well you say yes and they hand you a shamrock or a heart or whatever it is that you can right your name on it or in honor of someone.  They then pin it up on the wall with all the other donations.  Well I am going to be taking donations to write a child's name suffering from Juvenile Dermatomyositis, or Myositis, or Polymyositis.  So lets say you want to donate $5.00, I will write a childs name on my leg to honor them.  Yes, I am still figuring out how I will get those names on.  It makes sense to use a sharpie because it is durable.  But I am exploring other options.  I usually write CURE JM all over my arms and legs but I thought this would be a fun way to raise money.  I will be emailing the JDM community to get permission to use there childrens names.  If I don't have permission, I will NOT write their name on my leg.  If I get good response, I am willing to use my arms.  BIG BUCKS, I will use my face : )   It's all for the cause. CURE JM :  )  Let me know what you think.

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