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
Wednesday, January 18, 2012
Friday, January 6, 2012
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/
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/
Subscribe to:
Posts (Atom)