Tuesday, July 13, 2010

No Posts?

Now you know when you don't hear anything that is either good or bad.  Well its GOOD this time.  Gary is doing excellente!  We have an infusion tomorrow.  Yuck. But since he is doing so well, I am looking forward to our clinic appointment on Thursday.  I am hoping we can go down on something or maybe space an infusion out to 6 weeks instead of 4.  He has been tolerating the sun well,  with as much protection as I can give him of course.  His skin seems to be returning to a normal state.  He has a few small area's, like his arm pits and little bit on his tummy and chest that show signs of vascular damage or activity but his strength is 99.9%.   I am feeling over the moon about all this.  I mean its just break down and cry pure joy.  For a whole year, I just wasn't sure. I wasn't sure they were going to be able to knock it down and keep it quiet.  There is a whole new confidence I have now.  I know we still have a long way as far as getting off medications which is the true test.  But if it wouldn't be too much to ask, lets pop the cork on a mini mini bottle of champagne and give a toast to.....you guessed it.......my friend Rituxan.  We will have labs tomorrow so I suppose we can hold off on the toast until then just to be on the safe side.  In the mean time, here's too the climb.

Forth of July
I hope everyone enjoyed the holiday.  Ours was great.  Cold but good.  Gary really had fun.  We went and did some camping with Uncle Bill and Auntie Alyssa.  We rode our bikes, played games, roasted hot dogs and marshmellows.   Gary's appetite as been really crazy lately.  We are talking non-stop eating.  I am staking claim on that he is growing and growing.  Sure, he still on steroids but eating is good.  It's healthy.  If your eating, then he must be feeling fine ; )

Make-A-Wish Foundation
And back in the blog news is Make A Wish.  I know I mentioned it couple months ago that Gary was approved for a wish.  Well it looks like sometime this week or maybe next that wish will be granted.  Gary will be receiving a sun covered play system in our backyard.  We took a little time to really search our heart and our minds when making this wish.  Essentially it feels we are making the wish for him.  So we had needed to make sure that it was the right way to go.  Our thoughts were, what if one day, when he is older, there is something he can verbalize that he wants.  But we came to the conclusion that not only for his protection, but he will have a blast on it.  The system is being donated by Rainbow Systems out of Spokane, WA.  The cover is being donated by a company in Ohio.  We are excited for him.  I will keep you posted of any activities or parties surrounding this event.  

Make-A-Wish always bring present and goodies.

Other Happenings......
My nerves are kicking in.  I am registered for the Seafair Triathlon coming up already on Sunday.  Why do I get myself into this LOL?     Oh yeah,  because I can.  Jump to my Running BLOG.

1 comment:

  1. Ericka,
    This is FANTASTIC NEWS!!!! Eeeeeeeeek I am so excited he is doing so well! Yay Rituxan and yay mommy after all he wouldn't be getting this well without the bestest advocate like you :0)

    I am stoked that you are doing another run!! Amazing.....I just bought a DM shirt that donates proceeds to research....I will post it when I get it....it is pink and says Stamp OUT MYOSITIS.....I am trying hard to raise awareness I can't run marathons but by golly I can talk about it !! And we all know I can talk LOL

    I am going on an emergency visit to JHU in a few weeks and I am gonna ask about the Rituxan they have to do a bone scan on me too....these meds blech...

    Anywho thank you so much for the pick me up on my blog the other day! It is so out of character for me to blog the negatives of how I feel with this disease but I really felt better after I did and your comment made me cry knowing that even though we haven't met we are friends and you do care and are supporting me too! Thanks for it....

    Love that pic of Gary what a cutie

    Summer :0)