Miles traveled part 2!

Miles traveled

Remicade Round 2- dose 2

There are days when this Journey with JIA just plain SUCKS!  Yesterday in many ways, was one of those.  We have the most amazing Rheumatologist!  She really cares about my kids.  When we went for my little girls infusion yesterday, After talking to the Rheumy we added a drug called Solumedrol, it is an IV version of Prednisone.  We are trying to control her inflammation.  We are on her second round of loading doses for Remicade.  She is on a higher dose this time.  Im infuriated at the fact that it doesn't seem to be doing what it is supposed to.  I hear all the time  "Well, AT LEAST it is JUST ARTHRITIS" The world in general needs to come to a different understanding...  it is NOT just arthritis, It is an autoimmune disease.  It is an over active immune system that instead of the body dissolving those antibodies, decides to attack joints, sometimes, one or two sometimes more.  My little girl...  Ive lost count...  her toes, fingers, wrists, knees and ankles are ALL affected.  THEN...  we have another area affected...  her Jaw...  She has already had them injected, and the inflammation is back...  in less than 3 months she started showing inflammation after having her Temporal Mandibular Joint injected.  This is NOT fun to watch.  It is our reality.  Today I am not very optimistic.  Tomorrow is another day.  It will shed new light on a new day and hopefully another day closer to a cure.

Sometimes a boy just needs his momma! <3

Shot night with a friend...

Dear Amy thanks so much for sharing your blog I hope you don't mind that I shared this but it was so well stated that I could not resist sharing!

http://networkedblogs.com/sRsPJ

Update

I just realized I have not updated since August.  EEEEEEKKKK!!!!

So much has happened in such a short amount of time.  We found out Abbie was allergic to Humira and we have switched her to Remicade.  We were originally told that we would do her dosing at 2 weeks 4 weeks and 8 weeks...  well, we did.  The first 3 doses just like that but after the first 4 weeks she was begging for her infusion.  We have stayed at every 4 weeks since September which means that we drive to Utah, 376 miles one way to our infusions.

I have to say this is one reason I want to be an advocate for Juvenile Arthritis awareness...  Idaho is one of several states in the U.S. that does NOT have a Pediatric Rheumatologist.  The next closest Pediatric Rheumatologist is in Portland, OR, and then Seattle, WA.

This week I'm a little reminiscent because one week from today will be the day we started on our journey of full fledged treatment of JIA.  Abbie has failed 2 TNF Blockers http://www.webmd.com/rheumatoid-arthritis/news/20090804/child-teen-cancers-linked-to-tnf-blockers  and we are now waiting to see how her last MRI of her jaw looks to see if she has failed the 3rd or not.  January 13th 2011 changed the way I will look at Arthritis forever.  I can hardly put into words the emotions I feel.  Some times it is overwhelming but I have gained the most amazing support from friends all around the world.  I am truly grateful for the education and compassion I myself have learned because of my kids and their diagnoses.  For more information on pediatric Juvenile Arthritis go to http://www.arthritis.org/

Shot night mixed with Compassion

Tonight is shot night...  (it used to be Saturday)  Humira,for Abbie and  Methotrexate for both Abbie and Jeffery...  Bailee heard Abbie scream into a pillow and comes over and said, "I will hold your hand"  We did her MTX second and it apparently doesn't burn and she said, "My hold your hand Abbie??  My help you not a cry"  Jeffery was second and he is very brave ALWAYS...  for his shots. I told Bailee "do you want to hold Jeffery's hand and help him feel better?"  Bailee said, "yes, My help him not a cream"  She comes over holds his hand and talked him through his shot," Don't cry Jeffery, my right here, My love you, my sorry you have a shot, my love you my right here..."  The one thing i have learned from this whole Juvenile Arthritis experience is how much my kiddos love each other, how much compassion they have learned for each other...  With this I have learned I have done something right as a parent, I have taught compassion.

There are days, when I hate this disease, more often than not...  today, for some reason even after the horrid Humira, Im grateful for the compassion and love in my home that my children have for each other...  in some ways, I wonder if even though this is a debilitating disease if part of the blessing in this is...  what we all are learning from each other....  to love each other more a learn more compassion than we might have.