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.

The REASON for this Blog!

A & J  

Shots x 2

Post shots...  Not extremely thrilled but they are great at pretending <3

Jeffery Eye MD

Today, we went to the eye doctor.  Our eye doctor  HAS TO BE  an MD, because of the possible chance of developing uveitis or iritis.  Both are inflammatory eye disorders related to Juvenile Arthritis.    There is also a higher risk of the Chemotherapy drugs used to treat JA causing visual disturbances.  SO...  we went to the eye doctor.

Dr. M.  He is great my kids like him.  He told us today that we only had to come in once a year.  I was a little annoyed so I asked him...  WHY only every year when the Rheumatologist ( aka Rheumy) said, at a minimum every 6 months?    He said, "OH!  Ok...  well lets do 6 months then."  He then proceeded to explain that since "JA, is so uncommon, that there is not a 'real' standard protocol unless there is inflammation"  I was floored...

 UNCOMMON????  Really?  300,000, yes, three hundred thousand kiddos have it...  I know of approximately 100 families...  1 here in idaho...  that have it and are affected by it...  it was just shocking to hear that from the doctor.

So...  the verdict, we have dodged a bullet thus far!  Jeffery's eyes are free and clear of inflammation.  YEAH!!  :o)  He is though however in need of glasses, which I will post at a later time.  He will return in 6 months to have his eyes re-checked, and we will pray that there are no adverse affects from the medication, and no arthritis inflammation.

YEAH for great check ups!

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!

JIA Raw and Real

So earlier this year, we were told that my oldest- Abbigale (A) had Juvenile arthritis after almost a year of  wondering what a rash was from ...  swelling that went un explained and trying numerous anti inflammatories...  The doctor told us in January the official diagnosis, after an MRI numerous x-rays that out sweet beautiful Abbie had JIA.

JIA= Juvenile Idopathic Arthritis I was clueless.  The Arthritis Foundation page at the time seemed so unfriendly so I went to my "social network"  and started looking up JA...  Anything I could hunt down.  I remember writing on the page how lonely it felt.  It was like I was in this diagnosis process.  More than once I have stated my anger at the fact that I have a daughter who is suffering with "an old person disease....  More than once I have thought it was unfair that she has to have weekly injections...  TONS of daily meds, mouth sores, sore joints, weird rashes...  This disease is horrible, its autoimmune, and NOT CURABLE... You can go into remission but the joint damage that occurs IS PERMANENT!!! 

Children with JA are treated with Chemotherapy drugs.  As a parent you have to choose...  to treat, or not to treat.  It is not an easy decision.  The meds sometimes are just as bad as the disease...  I chose and still choose to medicate.  Long term benefit wins hands down to any other treatment. 

This is where our journey begins...  from here on out...  this is it raw and real...