Wednesday, July 6, 2011

June synopsis

 June rolled around... June has been the worst month of the year so far....  So here are the highlights...
  •  We were offered a scholarship by the arthritis foundation for a week of conferences in Washington D.C.  
  • Started  Enbrel
  • Arthritis Walk 2011
  • MRI- done for 6 months
  • Visited with Family
  • Got to go hiking with kids
  • PLAYED with Kids
I started feeling like there was light at the end of this tunnel we are in, when we were offered the Scholar ship.  I had to turn it down.  One...  because hubby has to work...  two... the cost of airfare...  :P  I was DEVASTATED

Enbrel- first off I have to say, Enbrel is like a miracle drug!  Within 2 doses, She was moving better...  and seemed to be feeling better.   Enbrel is a FORTUNE!!!  But they have the most amazing program called Enbrel Support that will pick up your co-Pay on the meds.  They are WONDERFUL  every expirience we had dealing with the drug company has been great...  Now for the down side...  After a month of using it, my little girl got a "site reaction"
End of June pix

First week of July Photo-  So it's official, Abbie is allergic to Enbrel.  She had a MASSIVE site reaction AND she had a rash on her bum from it.

 Then MRI  was a long day, Abbie had hers and was sedated but apparently she is a restless sleeper and the MRI Lab told me  When we went back to the doctor 2 weeks later...  we just waited ...  I just waited...  on pins and needles hoping that Her MRI would come back with different results than what we saw on the MRI in January...  No such luck.  She is still inflamed. Her jaw is still deteriorating...  we thought we could stop or at least lower the dose of her MTX...  THEN she had the site reaction from the Enbrel.  

AND all during this month at the same time wondered what the doctor would say about Jeffery (J)  And his swelling.  

Jeffery Results...  X-rays and joints show active arthritis-  This was a horrible blow to end the month.   I am still reeling at the diagnosis...  after two weeks...  I hate JIA, I HATE that my kids have to deal with this and I HATE there is not more awareness.

My goal:  Bring Awareness to JIA through what ever means I can!

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