The journery of my Heros!

Yes, I have been a blog slacker. I apologize to my MANY readers, LOL! Today, I have reason to blog. Things are on my mind, things to be grateful for!

As many of you know, both my girls Stella and Cambria had juvenile arthritis. YES, kids get it too! It is not all that common and it's even more UN-common for siblings to get it. WE are the lucky ones. :) Basically, in a very simplistic nutshell...the immune system is overactive and attacks good cells and that cause inflammation in the joints.

Cambria was first diagnosed when she was 18 months old. Cambria walked at 12 months and quit walking at 15 months. Well...she would walk, but after waking up in the morning and after a nap - she would crawl for the first hour and then slowy start to walk again. At 16 months we noticed that her left knee was swollen and red. We immediately took her into her pediatrician who sent her to a pediatric specialist who was absolutely no help whatsoever! We ended up seeing several other pediatric specialists until we finally saw a pediatric rheumotologist at Children Hospital Los Angeles. At that point she was unable to fully extend her left leg. They put her on Naprosyn (same class as ibprofen) for a year. It upset her stomach so much that she didn't eat very well and from 18 months until 2 1/2 years old - she gained "1" pound only! She also wore sleeping splints for awhile. We took her in and they casted her left leg. Then after it was dry - they sawed the cast off so it was in two long pieces, and put velcro straps on it. She wore this when she slept. It helped a lot, but the best help came when she was switched over to a new medicine. It was called Methotrexate. This is actually a cancer drug. However, arthritis children can take it in smaller doses and they find that it acutally quiets down the immune system over time. It worked tremendously and continues to do so for Cambria. She does have a leg length descrepancy, but only a very small one. When we moved to Texas she was able to be seen at the Scottish Rite hospital for children up in Dallas. It is a completely free hospital which is such a blessing for us. The doctors and entire staff are wonderful and the facilities are fantastic!

Stella was diagnosed much later than Cambria. In fact she has only had it for two years. For first grade, I was inspired for many reasons to bring Stella home from public school and homeschool her. She would sit across the table from me doing her work and when she would get up to walk, she was VERY stiff. She also was a homeschool PE group through the YMCA. She enjoyed this a lot, but one day came home and her knees hurt, and I looked down and saw they were swollen...I still remember it like it was yesterday, I walked slowly over and felt her knees and they were hot to the touch...I KNEW she had it too. :( She has done well with joint injections and Naprosyn for the overall stiffness. This month at her doctors appointment, the doctor saw the scarring she had on her forehead. I thought Stella was scratching herself and then picking at it so that it wouldn't heal right. Little did I know that the Naprosyn was causing the scarring. Stella is now taking Mobic and it seems to be working fine. Stella has not had the uveitis present itself so far and they tell me the older she is without getting it, the more likely she won't have it. Yay!

These new doctors at Scottish Rite introduced us to another wonderful therapy. Joint injections. They basically put a (squeeemish alert) big needle into the joint, extract what they can of the fluid and then put a steroid in. The patient has to be immobile in a splint for 24 hours but these last up to a year or more. Both girls have had these a few times and they are such a blessing. Cambria only has two joints involved so far, both knees. That in and of itself is a blessing. Many other children have many joints involved. Even some have the jaw involved and they have trouble talking and eating. The only other problem Cambria has with this is she did develop something called uveitis. This is inflammation in the eyes and if it goes untreated it can cause blindness. The symptoms are usually silent, so they need to be examined every 3-4 months. In 2007 she had a flare where she had inflammation in her eyes and she had to have drops put in her eyes 7 times each day. She was an amazing trooper through it all. It took about 7-8 months for it all to clear up, but she hasn't had a flare since. Each time we go to the opthomologist I hold my breathe. Sooo.....my reason for bloggin about this...

Today, Cambria had an opthomologist appointment....and I held my breath that nothing would be wrong. On the way to the appointment, Cambria asked an "out of the blue" question. She wanted to know if she was going to get glasses. Now, she's been going to the eye doctor since before she could remember, and she has never asked this before. So, the first thing they do is check the vision and she does very poorly with her right eye. Immediately I think, oh no - inflammation. They dialate her eyes and we wait. I love her doctor, because somehow he just knows that I'm holding my breath, so he never waits to tell me. Each eye, he says..."looks good". Whew! He then tells us that she would benefit from glasses. Ha ha! Cambria was sooo excited.




So, here are some pictures of my glowing, happy and healthy kids...it's a joy to watch them feel good, to run and to be able to do anything they desire to do. I am so grateful for the doctors that treat my kids, they have no idea the impact for good they have made. Everytime I drive up to Dallas (about an hour) I thank my Heavenly Father for the car I'm driving, the roads that were built for us to get there, the safely I have while I'm getting there, the closeness of the facility for me (others have to make at least day trips if not more), the wonderful facitlity, Ms. Sherry for her wonderful skills to draw the girls blood. But, most importantly, I thank my girls. Stella and Cambria...YOU are both my heros! I always put on the brave, happy face, but YOU are the ones enduring the pain and smiling through it. What a fantastic example you are to me. :)