Addyson 3 year anniv

Addyson's 3 year Anniversary has come and went. It was kind of a bittersweet day. Thankful that she is doing very well but sad that she is still on meds. I think back to 3 years ago and how our world was turned upside down. I think Addyson handled it all better than anyone else in my family. Yes she was only 3 at the time that it all began but I can promise you this. My other two kids could not have handled what she went through and is still going through.

Addyson is loving 1st grade and is learning so much. She can read so well now and is continuing to amaze me daily. She has a memory I wish I had in school. Addyson had her first basketball game yesterday and scored two baskets. She was aggressive and loved playing. This is honestly the first sport i have seen her excited about! A few years back she could even walk around the mall and too see her running up and down the court is amazing! Its honestly the small things that she does that makes me smile!

Addyson will have blood work this week and we will now the results next week and right after the first of the year we will head to Dallas to meet her new doctor. Not having a doctor to handle this disease isn't fun. Luckily she is doing well or I have no idea what I would be doing. I will update once i know the results of her blood work.

Quick update since school started

A quick update on Addyson.  She is doing very well.  Addyson is loving 1st grade at her new school. Her teacher has been amazing with Addyson and is right on top of the sunscreen which is a huge deal. I couldn't be more happy with how the school handles her disease. She is almost done with soccer and getting ready to play basketball for the first time in December. She does complain about her next neck hurting from time to time. We see her New Doctor in January and I will talk to her about that.
Matt called Dr. Jarvis awhile back and he seemed very weak on the phone. Which breaks my heart b/c he pretty much saved Addyson and he will always have a special place in our hurts for that. I hope and pray he gets better soon b/c we are so lost with him and having a trustworthy doctor to go too. 

Lab results and visit with new Doctor

Addyson had her blood draw a few days ago and during her visit today we got the results back. Everything looked perfect. Her LDH was high but nothing to worry about because it could be she is growing. So we are headed in the right path. This is our 2nd visit with this new doctor here at OU Children's. I still don't get a good impression of her and she doesn't seen to know much about JDM. Which makes me extremely nervous. Luckily we are keeping everything the same for now. Which I want to do until I met with another doctor anyways. Our plans were to go to New York this summer to see Dr. Jarvis. I knew he was in the hospital as we called his cell phone but after not hearing from him in months I finally found out he will not be returning to work. Whatever is going on with him must be very serious. Which makes me sad because I love Dr. Jarvis. He has been with Addyson since the beginning. So I have been trying to schedule an appt with Dr. O'neil in Indiana. But they want Addyson records before they will make an appt. Easy enough, right? Yeah right!! Dealing with OU children's is unreal. I have been to OU and filled out a release form on June 29 and Indiana hospital is hasn't received them. Ugh so frustrating all of this is.  Then After taking to the Children's Hospital in Indiana I ind out Dr. O'Neil is having surgery. Hopefully nothing serious so I can get Addyson an Appt in Sept or October.

Overall Addyson is doing very well. She has been in gymnastic and is doing great. She learned how to swim and this fall she is going to start Soccer. So she is very active. She will be starting 1st grade very soon. She is ready to go back. We also got her a little kitten. It is her best friend. It goes with her everywhere and sleeps with her at night. We named him "Romo'. Daddy is a Dallas Cowboys fan and we already have a cat named Dezzie...lol Life is going great for Addyson and hopefully we can get through our Hot summer with no flares!!!

Addyson with Romo

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!!

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.