Tuesday, July 28, 2009

July is National Juvenile Arthritis Month

If you are reading on this site you know...I'm a parent with a child diagnosed w/ Juvenile Dermatomyositits - a rare form in the juvenile arthritis family of diseases. I came across this information online and wanted to share with anymore who may not know how many children are affected by arthritis. On my site, I have a firstgiving block. If you feel compelled to make a donation to Cure JM - the organization my daughter's disease is most associated with - please do so. And thanks...

When we are becoming parents, our one wish is that we have happy, healthy children and that no harm comes to them. Imagine if your child were living with pain every single day of their lives. This pain can be controlled but not eradicated. There is no way to prevent it and no cure- only hope to keep the progression to a minimum and the child in as little pain as possible. Can you imagine how you would feel? I know how it feels...it's the absolute worst feeling possible.

July is National Juvenile Arthritis Month. Facts from the Arthritis Foundation:
Juvenile arthritis (JA) refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Impact of Juvenile Arthritis: Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions. Juvenile arthritis is one of the most common childhood diseases in the United States. Common Symptoms of Juvenile Arthritis: Pain, swelling, tenderness and stiffness of joints, causing limited range of motion• Joint contracture, which results from holding a painful joint in a flexed position for an extended period• Damage to joint cartilage and bone leading to joint deformity and impaired use of the joint• Altered growth of bone and joints leading to short statureTypes of Juvenile Arthritis:• Polyarticular JA affects five or more joints and affects girls more frequently than boys, most commonly affects knees, wrists and ankles can affect weight-bearing and other joints, including hips, neck, shoulders and often affects the same joint on both sides of the body• Pauciarticular JA affects four or fewer joints and usually affects the large joints: knees, ankles or wrists often affects a joint on one side of the body only, particularly the knee may cause eye inflammation (uveitis) which is seen most frequently in young girls with positive anti-nuclear antibodies (ANA)• Systemic Onset JA can affect boys and girls equally cause high, spiking fevers of 103 degrees or higher, lasting for weeks or even months cause a rash consisting of pale, red spots on the child’s chest, thighs and sometimes other parts of the body; cause arthritis in the small joints of the hands, wrists, knees and ankles. Other Types of Juvenile Arthritis:• Juvenile Spondyloarthropies (ankylosing spondylitis, seronegative enthesopathy andarthropathy syndrome) are a group of diseases that involve the spine and joints of the lower extremities, most commonly the hips and knees.• Juvenile Psoriatic Arthritis is a type of arthritis affecting both girls and boys that occurs in association with the skin condition psoriasis.• Juvenile Dermatomyositis is an inflammatory disease that causes muscle weakness and a characteristic skin rash on the eyelids and other areas such as knees, ankles, elbows, wrists, chest and hands.• Juvenile Systemic Lupus Erythematosus is an autoimmune disease associated with skin rashes, arthritis, pleurisy, kidney disease and neurologic movement.• Juvenile Vasculitis is an inflammation of the blood vessels and can be both a primary childhood disease and a feature of other syndromes, including dermatomyositis and systemic lupus erythematosus.

Causes of Juvenile Arthritis:
The cause of most forms of juvenile arthritis is unknown, but it is not contagious and there is no evidence that foods, toxins, allergies or vitamin deficiencies play a role. The primary goals of treatment for juvenile arthritis are to control inflammation, relieve pain, prevent joint damage and maximize functional abilities.

How does the Arthritis Foundation help?The Arthritis Foundation supports research, health education and government advocacy efforts to improve the lives of the nearly 46 million Americans with arthritis, one of the nation’s most common causes of disability. Check them out at www.arthritis.org.

As mentioned earlier, another organization closer to my daughter's disease is Cure JM. They are also doing great things. Check them out at www.curejm.com. Today, I ask for you to take a moment to give thanks for the healthy children or grandchildren in your life and then check out these sites to learn a little more about these debilitating diseases that affect so very many children.

Friday, July 24, 2009

Home from camp

We got a call from Madeline Wednesday night. She was crying and very homesick. She said she hated camp and wanted to come home. I tried to coach her to stay. She called back three times. Once she couldn't breathe for she was crying so hard...we left to go pick her up.

She was so tired and so unhappy. She said it was too long to be away from us. She also said she couldn't sleep, people kept stepping on her toes, she couldn't take long showers and they made her clean. I guess the princess is not up to camp life.

We were so tired the next day at work for we literally in the middle of the night drove to pick her up. But, I also slept very good knowing she was back under the roof with us.

Oh - and she never, never, ever wants to go to camp again. She says she is more of a shopping and spa person.

What a nut!

Wednesday, July 22, 2009

Camp update

Madeline is on day three of camp now. Her first night she called and said she was homesick and began crying. It was all I could do to not get in my car and go pick her up. But, she never called back.

Last night, she called and was happy and content. She said a boy asked her to dance at that dance, but she told him no. I asked her why she said no and she replied...he wasn't cute. She went on to tell me no one cute is asking her to dance. I then told her I'm sure you are not getting asked to dance because boys are intimidated by you because you are so pretty. She actually told me...That's exactly what I was thinking too!!! She is nuts!

Glad she is having fun. I can't wait for Friday to get here.

Oh - and the good news for mom...it's raining there. I was so worried she'd not apply and reapply her sunblock. So, this makes it one less thing for mom and dad to worry about.

Sunday, July 19, 2009

Packing, packing, packing

We've been packing for camp for now three days. We are finally ready. I think her luggage is around 40 lbs each though. It will be interesting to know how she will bring all this to her cabin. Hence, we don't get to go to camp w/ her. We drop her off at a school where a bus will bring her. Oh...this is going to be hard.

I'll post a picture of her on her way tomorrow. She is so excited.

Tuesday, July 14, 2009

Madeline is going to camp!

Madeline is going to camp next week. This will be her first time to ever be away from us more than one night. She is so excited. Her mom and dad, not so. :)

I've made a list so we can start packing. Madeline found out there are dances each night so I am sure she has outfits already selected. I wish I could be a fly on the wall. I'm sure there will be loads of 10 year old drama going on at the dances.

It's really going to be hard letting her go for a week. I'm so excited for her, but selfishly wishing she stayed home. She'll be fine though. She's a smart, tough little girl. Now, I just have to work on myself.

Monday, July 13, 2009

Which is better?

We had a great weekend w/ family at our house, swimming, etc. Madeline did get a little sunburned on her face. It seems no matter how much sunblock we put on and repeat applying she still can get a little red. It makes me feel terrible and irresponsible as a mother.

Which is better - never letting your child go outside or to get sunburned? Either way, there is no good answer. Never in my life would I think I'd have to worry about such things. Ridiculous!

Thursday, July 9, 2009

Vacation Pics




I wanted to include a few pics from our vacation in the Smoky Mountains. The first picture is Madeline doing her signature super model pose at a stream we stopped at and explored. The second picture is of Trey and Madeline in downtown Gatlinburg.

We had a great time and never slowed down. Our favorite was horseback riding in the mountains. We were even surprised by seeing a bear 100 ft. away from us. Scary!


Tuesday, July 7, 2009

Been on hiatus

I know...you've probably wondered what happened? I've been on hiatus. Not because anything is wrong. We've just been going and going.

We had a great vacation in the mountains. We also had a wonderful 4th of July weekend w/ family and friends.

Madeline is doing great. I see a little redness sometimes on her eyelids...but I may be looking too close and may be seeing something that is really nothing. Who knows....

Great news about Madeline is that she is doing a solo next year for dance. She began last week her private classes w/ her teacher. She will perform lyrical ballet. I can't wait to see her. She practices constantly and is loving every minute of it.

We still plan to decrease her meds in September. I am honestly horrified. All is so good...and I want it to stay that way.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.