There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Thursday, March 5, 2015

Finally back on the Remicade - after a year of searching/trying!

IV in & eating a cookie


Just Waiting it out



Tired
Getting IV out & Ready to go!   Sleeting and
29 degrees out!

Wednesday, March 4, 2015

MEDS CAME & Tomorrow is first treatment again...

WOW, Supplies came for 1st two Treatments!
Here is the $12,000.00 Remicade




 
     Well the meds finally came!!!  All I can say is WHEN GOD MOVES A MOUNTAIN OUT OF YOUR WAY.... HE REALLY MOVES IT! There is no other way to explain how all this happened.... But to declare it is a miracle. It still baffles my mind !  But, yes I am still scared of the meds (see pics below), but must remain faithful to believe that HE wouldn't have moved this mountain, in this huge way, unless it was good... So as we begin this journey again.... I will fight Fear with Faith. 
      󾌵. PS- Brodys MRI:  dr said si joints look good but there were a couple pockets with fluid... And asked if he has had diarrhea..??? I said No... So he wants a stool sample this week, just to check.
     ***Thank you to all who have been praying for Bailey and Brody, and please continue to!  Bailey will get her first infusion treatment, in over a year, tomorrow.
.... I'm a big ball of emotions... Happy, fearful, hopeful, reluctant, overloaded, anxious, drained.... But somebody's prayers are getting through, so please keep it up and thank you for your faithfulness. 󾌵