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.

Blood results

We took her to see Dr. O'Neil for her appointment and to get her results. Addyson still wasn't feeling the greatest but overall is doing okay. She still gets the rash on her cheeks every once in awhile. She has been weak and tired but since she has been so sick, I didn't know if it was the disease or the illness. The blood results looked pretty good. They were not prefect but were not horrible either. We are not going to change anything and leave all meds the same.

Dr. O'Neil is leaving in a couple of months and now Addyson doesn't have a specialist in Oklahoma. Ugh They said they are suppose to be bringing in someone that specializes in JDM but no one yet. So frustrating to know you don't have a doctor that lives in your state. Hoping and praying a doctor will come soon to OU children's Hospital that has dealt with JDM before!!!

Sick

Took Addyson to her peds doctor today. Surprisingly she hasn't been to sick during the school year. Her immune system is very weak due to all the meds she is on but so far so good this year!! But she has been coughing for about 4 weeks and woke up last night complaining about her ear. So I took her to the doctor and she has an ear infection and a sinus infection. It takes Addyson awhile to get over illnesses so hopefully this stronger medicine he put her on will work fast. She only had a few hours of sleep last night but today was the last day of school and they were having a Holiday Party, so she wanted to go to go back to school. So I took her to school and when I came to her party I could tell she wasn't feeling good at all. She went to bed at 5 pm!

Blood draw

It's that time again. Addyson had to get blood taken but this time we went to Mercy's lab. OU children's have changed who they have take Addyson's blood and instead of driving 30 min, we went to a closer Hospital. Addyson has had Mavia draw her blood since she was diagnosed at the age of 3 and she was not happy that someone new was going to do it. But she actually did very well. In fact she was laughing while they took it. All the nurses said she was the first 5 year old to be laughing...lol We will find out the results on December 22.

update

I know it has been awhile since my last update. Addyson is currently off treatments again. She is still continuing to take the meds at this time. I would say her energy level hasn't changed much. For Halloween she made it down half of a street before she was tired and wanted to go back home. Sometimes it is just frustrating because she can't be a normal kid. Sometimes she is full or energy other times she falls asleep very easily. We go back to the doctor in December and we will draw blood then and see where she is at. Her rash on her face comes and it goes. She is still very moody. Matt and I just want her healthy and to act like a normal kindergartner. November 18, 2011 will be her two year anniversary of being diagnosed with this horrible disease. She IS still going to get to Remission, it just may take a little longer now!