Monday, June 18, 2012
I usually am positive with my post. Today however I can not be. I understand the nature of the beast you never know when it will hit hard or take your child down. For me as a single mother as I think we are making progress to notice something is not right. But to have the doctor's tell you no she looks great. BS!! I always trust my mother/parental gut instinct. It has never failed me yet, as mommy's we always know, people ask how do you its just we do! its our baby. I have told her doctor before he left and we had to get a new Rheumatologist. That Ava is getting bad flares again and low grade temps. He just goes she is fine and looks great. He knew but kept telling me look a year ago she was not walking it is a work in progress. Which is so true I totally understand that but it is so fustrating. Giving me strength and hope and telling me we can soon take her off the MTX (methotrexate). I knew something was not correct. After doing Ava's sedated MRI my gut feeling was right! She is not getting better we are losing control again not that we ever had control. She is highly active I was sad but happy that all my complaining that she is going back to her old ways. Not wearing shoes or socks taking a while to wake up and get out of bed. Telling me her hands hurt and her boo boo knee is back. Seeing her hold her hands in the position to relieve pain. I brought this all up and to have someone tell me its a habit BULLSHIT!! I know my child, I will never give up on her or her illness. The doctors might have the knowledge and which direction but they do not know my baby like I do. Or as any parent knows their baby remember that. Now that I have this new doctor's attention and she knows I know my stuff she no longer blows smoke up my ass or tries to brush me off. Never let a doctor do that. I will be part of every decision and what path to take. On June 26th is another long day for Ava she has x'rays, ultrasounds, blood work, eye exam and to get them dilated. Ava can now go blind because of the Rheumatoid Arthritis is so bad and she carries the extra protein and is ANA+. Not every child is positive for that but it is always on the back of my mind the what if. I have noticed even thou I might be acting like am not listening. I hear everything that she says and the way she says it how she expresses it or tells me how her body or eyes feel is so vital and lets me know what she is going threw. Now that we are going to have to take a new path of treatment I am uneasy about it. But I know it has to be done. As parents don't ever give up if you feel unsure like me question the doctors and question them some more until you feel confident. They work for your child and to make sure you understand this evil, sneaky, illness!