Thursday, April 26, 2012

We saw the Eye specialist for Addyson's black spot in the back of her eye. Thankfully it is just a freckle and nothing to be concerned about. he wants to see Addyson every 6 months to keep an eye on her because of all the medicine she was on in the past and what she is on currently. He actually even has a couple older patients with JDM. Amazing your don't meet many doctors or people that know what it is!!

This was a huge relief because just like when she was diagnosed you go online and look what this could have been. And I knew after reading that it was either going to be a freckle or cancer. I'm not sure I could have handled Cancer with everything Addyson has been through the past 2 and half years. My son is also having issues and I think God finally realized I need a break!!!

Still waiting on a Phone call back when we will go see Dr. Jarvis in New York! Not really excited to go but really what to get this disease under control and in Remission!!

Thursday, April 5, 2012

Update on Addyson

Last week, we met with a new doctor at OU Hospital for Addyson. Let's just say it was a horrible experience. The doctor was nice but she didn't know the disease. She said she had been in the lab the past 5-6 years and hasn't even worked with patients. She couldn't tell me about why certain blood levels were high and she wanted to start Addyson on Predisone but couldn't tell me why. Addyson pediatrician wanted me to ask about certain shots for Addyson and she couldn't answer that either. She said she was going to call someone and find out about the blood results and NEVER got a call back. So in other words, we will not be going back to here. We will be following Dr. Jarvis to New York. We have already spoke with him and he is making Addyson his priority. He felt so bad for leaving is in that situation. Which it wasn't his fault, I blame the Hospital. She is the only rheumatologist left in Oklahoma. So in May or June we will be going to New York to get things under control with Addyson's disease. This is a life threatening disease and not a disease I am going to mess with.

Addyson has been complaining of a lot of headaches lately and she has been pretty tired. I got a letter from the school that Addyson failed her eye exam, so yesterday I took her to a eye doctor. I wasn't surprised when he said she needed glasses and it makes since why she was having headaches. She was so excited to be getting them. lol If she only knew. But the doctor also found something wierd in the back of her eye and couldn't figure out what it was. It was only in her right eye. So he is sending us to a Pediatric eye doctor to have him look at it. Her appt is on April 24. I will update once I know but hoping it is nothing to worry about.