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!

Update

For the past month, we have noticed Addyson not wanting to walk long distances, getting very tired easily, and extremely moody. She even has been complaining of her legs hurting. The rash on her face would be visible and then go away. We knew something wasn't right. So Last week I had her blood taken after school one day. We got the results on Wednesday. The disease is back full force. Dr. Jarvis moved to New York so we had to see Dr. O'Neil. We had only seen her once before. She wanted to see Addyson ASAP. So I went and got Addyson out of school ( might I add I had just dropped her off 25min before I got the results). We went to OU Children's hospital were she was seen and given a treatment. They did a test to see how her muscles were doing. She was NOT up to where she should be. I knew that already though. She couldn't even walk all the way around the mall like she use too. She did okay during the treatment and the vein worked the first time. She was tired still but her face looked so good. Always does after treatments. The next day Addyson was okay, still tired but wanted to go to school. She made it through school but wasn't feeling good at all. She came home and feel asleep at 4pm on her bed. She did finally get up for a little bit and was still feeling sick and weak. She just laid on the couch with her little sister. Addyson's face looked like it did when she was first diagnosed. So we will start this journey again. Hoping we get her off meds and treatments very soon!

School starting

Addyson started Kindergarten on August 11!! She loves it and to my surprise wanted us to leave the first day we dropped her off! She is such a big girl! I can't believe she is in school. She has short recesses so I don't have to worry to much about the sun. It's been so hot this summer most of the time they can't play outside anyways. Her teacher and school know about her disease and we are also in the process of setting up her a IEP. Just in case she gets a flare. You just never know with this disease. But so far she is doing amazing and I have my happy go lucky little girl back!!!

OFF ALL MEDS

It's been awhile since I have updated on Addyson. 2 weeks ago she was officially taken off all meds!!!! yay!! So far she is doing great. We took her this past week to White water bay and she enjoyed the water slides and being outside being a normal little girl.

We did find out that Addyson's doctor Dr. Jarvis is moving to New York. He has done such a great job with Addyson we will probably be flying there for check-up's on Addyson.