My little boy is now 16 months old. He has suddenly turned into a little monster. I don't remember the girls ever being this rambunctious. He is into everything. I have tried just redirection that is a temporary fix. He waits for the opportunity and gets right back into it. He climbs on the dining room table into the entertainment center cabinet and he is constantly caught on the steps to the girls' rooms. I am afraid it won't be long and he is going to seriously get hurt. I have even tried time out and spanking. He just thinks it is funny. I am glad he is the only boy and our last child because I think he will be the death of me.

He is a big sweetie most of the time. I think he just needs to be exploring or climbing and conquering things all the time. It must be a boy thing. He is also very fearless. He doesn't even look back to see if I am following behind him when he gets outside he just keeps going and exploring. Maybe I have just been to good at protecting him and the first real injury will slow him down or not?

Juvenile Arthritis Advocacy

Well I finally did it. I was able to share my story with all of the elected officials. You can do it too. Just double click the title of this blog and it will take you to the website I used. This is what I sent to all the Missouri Senate, House Reps, Governor and even the President of the United States. It was pretty easy I typed it in word and saved it. The Arthritis Foundation had all their contact info and most of them had web forms. So I just copied and pasted the info in. I hope I can encourage others to do the same. It really only took 30 minutes to send this to all my officials.

I have a daughter born with Juvenile Arthritis I am writing you today to try and encourage you to support the Arthritis Foundations proposed bill. We are asking that the FDA keep track of what these powerful medications are doing to children by starting a registry. The medications have been a blessing. My daughter started walking at 9 months and quit at 14 months by the age of 2 you could no longer notice anything wrong with her. These kids and their parents have to make a choice of treating a condition that is very painful and affects quality of life, with strong medications that by side effects and warning could be very detrimental to their health. It would be nice to have all the facts out so we can make a better well informed decision. I don't know if Breanna will get pediatric cancer or if her lungs kidneys and liver can tolerate it if her condition persists. I do know that without the Methotrexate she would be in agony everyday all day. I can remember when it first flared I had given all the Tylenol and Motrin a little one could handle and at 3 am we were in a warm bath and both of us were crying. I could not take her pain from her. That is a parents worse nightmare, your child in pain and you can not make it better.

We would also like to increase research money. Arthritis affects 64 million adults and about 300,000 children right here in the US. It is also the #1 leading causes of people having to quit work and go on disability.

And the last thing we are asking is that Insurance companies quit discriminating against people with pre-existing conditions. I can not believe this has gone on. Discriminating against sick people should have never been allowed. If you with hold knowledge of a health condition and kept that information from the company it is fraud. But if you are honest about a health condition it should not affect your ability to get coverage or change the price or coverage you are offered.

My daughter started having problems 2 months after I started work with the State School. It took months to get a diagnosis. Our doctors here after 2 X-rays sent us to Children's Mercy They knew right away what it was and started treatment immediately. We started methotrexate, Naproxen and the expensive steroid injections. I was staring at $10,000 worth of medical bills. I worked for months as the middle man between the clinic and the Insurance Company. I was so stressed the doctors at children’s mercy noticed and referred me to a caseworker. It seems First Health was investigating a pre-existing condition. The caseworker who deals with these companies for a living was even having trouble sorting things out. They did eventually pay. They refused to cover her physical therapy and they kept fighting her eye appointments. I don't have vision coverage. It shouldn't matter she is high risk for uveitis because of her medical condition they cover it for people with diabetes. Why do we continue to let this form of discrimination happen? Help us by supporting The Arthritis Foundations Bill.

Again I would like to encourage you to share your story and how Health care Reform can affect your family.

http://capwiz.com/arthritis/home/ This is the website I used.

2009 JRA Conference

I made a little video of the conference. Just click on title of this blog and you can watch our video.

Potty Training

My Emily is officially a big girl she goes on the potty all the time when she is awake. She is dry most mornings. My step-mom kept the babies while we went to the conference and she is the one that should get all the credit. We use a timer that we set for about 45 minutes. If she doesn't go then we set it for 10 minutes we do this over and over until she goes. The potty is out and accessible. I know it seems weird to put the potty in the living room but whatever works at first. Emily wore lots of little dresses so it would be easy and they left the bottoms off at first. I guess she was a little surprised when she pooped on the floor. Can you believe she had no idea that came from her. When she successfully uses the potty she gets to put stickers on a piece of paper hanging on the fridge. If she is unsuccessful she gets a sad face drawn on that piece of paper. She has been doing this for just a couple of weeks and she has mastered it. We don't even use the timer now she will just go and the potty is now out of the living room and in a more appropriate place.

Chase is next!

Tummy Trouble and JRA

Breanna was a great eater before being diagnosed with arthritis. It wasn't until she was 2 that she became this horrible fickle eater. I noticed she did not eat that much and asked the doctor. He said, "Don't worry she is just 2." Well as the time passed it progressively got worse and worse. Breanna is not a skinny girl but she really only eats one time a day (lunch). I noticed sores in her mouth and acid reflux issues at almost 3. An intern asked if we had been taking folic acid. No I didn't know we should of. I guess it is common knowledge if you take methotrexate you should take folic acid. How was I suppose to know. I do know now that I have to be a very proactive member of my daughters team. Don't just put all your trust in the fact that the doctors will have all the answers.
Now Breanna is 4. At the 2009 National JRA conference I became aware that a lot of children suffer from chronic stomach aches. I learned that the medication can sometimes be the cause other times it's a condition associated with the arthritis going after soft tissues and other times its a completely separate problem. Never the less I needed to get to the bottom of the problem.
I came home and made an appointment with my regular doctor and explained that she complains of her throat and stomach burning, yucky burbs, diarrhea, and just doesn't feel like eating. He checked her out and agreed that she needed to see a specialist. I complained for about 2 years with her rheumatologist and got no where he got me the referral that day. The GI clinic is a busy one the next available isn't for 2 months.
So now I am dealing with the fact that the ankles and knees are starting to swell. She is still taking the Methotrexate, but she refuses the NSAIDS. If I do give the NSAIDS she gets nausea. I think we are going to try the mobic. I will post more about it when I find out more.
I am up for sugestions or comments if anyone has anything for me.

More on the Juvenile Arthritis Conference

At the conference we were able to meet so many great people. The parent Networking session kinda kicked the whole thing off. It was nice to swap stories with other mothers going through the same things. We also attended a lot of great workshops. Some of the things I have learned to implement in our home: The medical Journal - keep every bit of health history in binders so that you have it at all times accessible. A plant based diet is healthier. Fruits and vegetable are natural anti-inflammatory. While meat fats are inflammatory. Also Albacore tuna has more of the Omega 3. Nordic Naturals sells a taffy type that does not up set the stomach. We also found that the V8 fusion is a delicious way to sneak in more fruits and veggies.

We also have realized that this has its effects on the entire family. I may only have one child with arthritis but they all have to deal with it. The time it takes at all the doctors, watching her suffer when she is sick or having trouble getting around, and the added stress it puts on me all takes away from the other children. I hope that we can all really learn to take it one day at a time and always love each other even though sometimes it's hard.

National JRA Conference

I had the wonderful privledge of going to the National JRA conference. Although it did not cure my daughter, it has made my us all feel a lot better about this disease we are battling. Yes it does affect all of us. Breanna is one of 4 children and it has its effects on all of us. We were able to show Bre that she is not alone by meeting other children with the disease. My oldest daughter found out she is not the only big sister dealing with the emotional roller coaster of growing up with a younger sibling with JRA. I had not realized but I too needed to know that I was not alone in this battle as a mom trying to balance my life and the curve ball of all the doctor appointments involved in raising a child with JRA.