One year Anniversary

Wow! I can't believe it has been a year since Addyson was diagnosed with JDM. She has been through so much in a course of a year and I don't see anything letting up anytime soon. I am trying to stay positive though. I know Addyson will be one of the lucky ones that makes it to Remission, it just won't be as soon as I had hoped! I know God has a plan for this little girl. She is so strong and has so much courage.

Most Kids Addyson's age are playing with dolls. But not Addyson, she wants to take turns playing with her IV bear. She pretends to give me an IV and treatment and then I pretend to give her one. Don't get me wrong I am so happy who ever came up with Baxter the IV Bear. I think it helps Addyson. But it just gets to me knowing that my beautiful little girl, is even having to worry about getting Treatments and blood drawls!

Addyson has been complaining a lot about her right leg hurting. She limps and won't use that leg going up and down stairs. Addyson hasn't had to worry much about the muscle weakness but I think it catching up with her now. We go to Chicago on Dec. 5, 2010 and I am ready to go so I can talk to the doctor. She still doesn't have all her energy back and hasn't for some time.

I have decided as of the first of the year to get out of Real estate for awhile. Matt and I agreed that with all the treatments, doctor appointments, Chicago trips that it is best. I was spending more money keeping my license then what I was making. Once Addyson is better and hopefully in Remission, I will come back. Luckily I have a dad, that completely understand! Since My dad and I were a Team in Real Estate, it was good to know he didn't have a problem with me leaving for a while.

Results

Addyson's blood work did go back normal. Which is a good thing but on the other hand it doesn't answer my questions. She is still barely eating and has no energy. Dr. Jarvis took her off Meth. from a couple of weeks. He thinks it may be to strong for her. So after two weeks we will start it up again. We found out we will be going to Chicago On December 5, 2010. Which I am looking forward to so i can talk to Dr. Pachman about what is going on!

October 14, 2010

Well after speaking with Dr. Jarvis about Addyson. He wanted to see her ASAP. So Thursday, we went up to Children's Hospital. She received a treatment and also they took blood. Dr. Jarvis also came to see her during her Treatment. Dr. Jarvis wasn't even at the offices that day he came from the lab. I am lucky to have such a doctor that cares for his patients. He said he would call us after he got the blood results to see what the next step will be. I will update once I get that phone call.

Walt Disney World

Matt and I took Addyson along with my mom to Walt Disney World. Addyson had an unbelievable time. She got to get all dressed up like Cinderella., rode a ton of rides. Her favorite was Tower of Terror!! She didn't want to walk most of the time there. So that has me concerned. She isn't eating very well either. I am going to call Dr. Jarvis on Monday and see about them drawing blood and checking everything out. It could just be Addyson being lazy but something tells me is this stupid disease trying to creep back in our lives. I will let you know

ER visit #2

So Saturday Addyson woke up feeling worse and still running temp and throwing up. She couldn't keep the medicine down and was very tired. We called the doctor and he sad to take her to Children's ER. So we were there for 7 hours again. But they got her fever down, gave her fluids and gave her a bunch of antibiotics to kick the Pneumona in the butt..lol They were going to admit her but because of her disease they didn't want her around more sick kids with her immune system being so low. Which I am glad! I would rather have her at home! And the medicine worked. She started feeling much better on Sunday! Which is good because we leave for Walt Disney World on the Sept. 28th!

Pneumonia

Addyson start coughing on Thursday. So we took her back to the doctor on friday. Where they did an x-ray and we found out she had Pneumonia. Atleast I know what is wrong and we can get her on Medicine to make her feel better! Yeah!

hospital

Well Addyson has been complaining about a headache and has had fever since Thursday. I took her to the Mercy's ER last night where they ran a whole bunch of test. Everything came back normal. They gave her fluids but couldn't get her temp down. They finally released her at 3am this morning and told me to go to Children's ER. The doctor said he doesn't know enough about this disease. I took her home and called Dr. Jarvis in the morning. He told me to go to our regular doctor. Which i did. and he said this is just going around. I didn't like that answer. I will wait a couple of days and if her fever and headache is not gone i guess i will take her to Children's ER.