Home work with JIA includes an ottoman, heated blanket and one motivated girl!

Parent advocacy pep talk

I find myself at times, talking to other parents.  Whether it is for school, JIA, support groups or in a court room.  I am a sincere believe that advocacy is the only thing that can truly make a change in people's lives.  Lack of advocacy even for yourself, can be a bad thing.  Today I responded to another parent about switching doctors.  I thought I would share my reply because I feel it is something MORE JIA parents and parents in general...  aka ME / I need to remember!

As a mom/parent in general, don't worry about finding the right fit(doctors/ professionals in general.) How about this...  Worry about finding the right fit but don't worry what anyone else thinks about your opinion. Do what you feel is best for your child.  You as a parent you are your child's best and primary advocate, whether it be medical or education, social, you will always do what you feel is best. Many will try to steer you in one direction or another.  Not everyone will be happy with those hard choices you have to make.  I have made choices, that even my extended family do not agree with for my kiddos.  As a parent we have to be able to sleep at night knowing we (my husband and I) did what we think is best. It is HARD!  I sincerely believe we as parents were given the children we have because we are stronger than most!  <3  Don't second guess yourself!  You are doing great!  You are looking for help and support and those are the first steps in advocating for your child!

A & J at day break in Juniper,Idaho

They are fun kids :) I'm so lucky to have them :) So blesses to have found a sitter for my other three while we are in Utah at the doctor.

Waiting to see the Rheumy

Jeffery fell asleep after coming in the room to see the rheumatologist! He was up early so that will be my reason for him... But he looks soooooo sweet! <3

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/