Addyson update

Things seem to be going great with Addyson. She seems to be more active and hasn't been complaining about her legs hurting. She has started Gymnastics again and is doing great. She also just had her first Karate lesson this past Wednesday. She loved it! Anything to help strengthen and keep those muscles strong. Addyson is also started to eat more and even has gained a little weight back. Which we are happy she was getting too skinny. We will lower her MTX in around her birthday to .2. I am hoping and praying everything stays on this path!

Addyson will be getting her wish from Make-a-Wish in a few weeks. We will be going to Walt Disney World and staying at Give Kids the World resort.

I think back to a year ago and how things were horrible with Addyson. She had gained a lot of weight because of the steroids and how her disease was pretty much taking her over. And how now she is beating this disease! Praying she continues to fight and win this battle!!!

Great News

We met with Dr. Jarvis and he thinks Addyson is just having growing pains.. He did draw blood and everything is still looking great!! So in Feb. we will lower her MTX to .2 if she is still feeling good! We won't go back for 4 months and when we do he will probably taker her off MTX all together! yay! We will start to lower her other meds one by one after that!! Woohoo. If all goes well she will hopefully be off all meds by the time she starts school!

Update on labs

Dr. Pachman called me the other night and said Addyson labs look great! So she would like to stop treatments and then check blood in a couple of months. But great news!!! She wants us to talk to Dr. Jarvis about Addyson's Arthritis. He specializes in Arthritis and knows a lot more about it. We see him on Monday and will know more then. Addyson has really been hurting in her right leg. My mom has put a heating pad on her leg and she said it helps a little. Hopefully we will get some answers regarding her leg soon.

Chicago and MRI!!

We arrived in Chicago around noon on Sunday, December 5. It was very cold around 22 degrees and with their wind the news said it felt like -6 degrees. BRRR. So we only left to eat dinner!! On Monday we had to be at the outpatient clinic at 8am for Addyson MRI. Addyson was not happy about getting an IV! They had to poke her twice and she screamed! It breaks my heart!!! They got to her sleep and back in the room around 8:45. Well 9:45 past and then 10:15 pasted. We were starting to get worried. So Matt went to find out what was going on. Addyson was fine but for some reason that did an extra test on her leg. So she was under for 2 hours. It took her awhile to wake up and when she did, she was in another world...lol The good news is while she was asleep they took blood through the IV. So no more needles the rest of the trip!! She pretty much acted Drunk as Matt puts it. It didn't wear off of her until around 7pm that evening. so we spent the whole day in the hotel with her while she slept. We were suppose to see Dr. Pachman at Noon but because her MRI ran so late, they moved our appointment to Tuesday morning.

On December 7, we met with Dr. Pachman. She already had the results from the MRI and everything looked normal. Some of the blood work came back as well and it was normal. All great news! Dr. Pachman does think Addyson is developing Arthritis though. Which is not a good thing. Horrible thing in fact. One more thing in her life that she doesn't need! More medicine and at times can be very painful for Addyson!! I am suppose to call Dr. Pachman on Monday to get the rest of the results and the plan for what is going to happen next. She was going to get all of our medical records from Children's ER and Dr. Jarvis and then call Dr. Jarvis. So I guess we will find out more on Monday.

Later this day we went down to Navy Pier to get Addyson's sister Kaylee some Penguins that she fell in love with. We wanted extras in case we lost her penguin in the future! lol

The next day we flew home! Ready to be home and way from that cold weather!!!

MRI

We will be leaving for Chicago on Sunday but we found out Addyson will be having an MRI and she will be put to sleep while they do the MRI. I guess the test is 45 mins and the machine is loud and they need her to lay very still. I never like it when they have to put her to sleep but I understand why they have to too! Hopefully we will finally get some answers regarding her leg. Addyson has been running a fever for the past few days. I am thinking she is getting a cold. I hope she can get over it before we get on a plane! She has also been extremely tired lately.

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!