Ava is my daughter and living with Polyarticular Juvenile Rheumatoid Arthritis. I hope you enjoy our blog and find it helpful and supportive to other parents and children going through the same ordeal. Together we can make a difference and hopefully bring awareness for this childhood disease. Ava is consider severe, Ava has it in her fingers, wrist, hands, elbows, hips, knees, ankles, feet, and toes. Ava ia also ANA + meaning she has it in her eyes as well!!
Tuesday, April 3, 2012
One year
What a year it has been. I felt like my life has been on emotional roller coaster and we are at the end of it just taking in the sites. In the last year Ava has been thew so much for such a small person and only at the age of 2. I sit back with tears of joy that we are now seeing the rainbows and sunny days again. I can never thank Dr.Lopez and his team enough for giving me back my little honey bunny. To see her run around, laugh and smile and just be a average 3 year old. This time last year Ava was not walking on her own really, couldn't use her fingers or hands, not sleeping high fevers etc. March 8th 2011 first time we meet Dr.Lopez did all the testing on March 23 they took bone marrow to make sure she didn't have cancer. Talk about a stressful moment in any parents life, I thank god every day that she did not have cancer. Then to start to find all the medications that will work for her. Today April 3rd last year Ava had a seizure to one of them. I never again gave her that medication. April 5th we got her diagnose. April 12th we start her chemo drug Methotrexate. We have been on it now for a year and her anti inflammatory. No more steroids. The hospital that we were getting PT and OT decided to play with our insurance and try to say nothing was wrong with her. It was so hard to even try to find any PT or OT that would touch her or even deal with children like her to help her. I wish there was more available to children like them. I really hope someday that more facilities learn how to help them. I never gave up I explored every avenue and educated myself. Almost every company on the list for pediatric help was not. No one dealt with small children under the age of 7. I did not stop or give up I would call write letters and so on. I finally found out that my own Town can help me. They have a school Roland Green. That helps children with many disabilities even thou Ava had physical they would still take her. It was a process but everything is they wanted to make sure they can help her. I know I came off very stressed which I was a single mother tring to help her child and every door closing on me is would do the same to any parent. The school took her and was able to help her this year. I don't know how to thank them enough the Teachers, PT and OT all the wonderful team that is there. They helped her and didn't make her feel different. To my family and all my friends who have all been so supportive and to the strangers who heard Ava's story Thank you for your support as well!!! We can not thank all of you enough from the bottom of our hearts. We would not be watching my little honey bunny enjoy life again and play. For parents out there going threw the same thing. I encourage you to never give up fight and if you have to fight some more for child because no one else will. To my new JA family I am happy I was added and the support and information from all you is helpful.
Subscribe to:
Posts (Atom)