Nov 11, 2010

An update on Ayla's Arthritis

A very long day at Ayla's Rheumatology appointment!



Wow, It has been a while since I have updated about Ayla's condition. Since starting on Enbrel injections last year, she has been doing wonderful. The plan was after being on the Enbrel and Methotrexate for one year without ANY signs or symptoms of arthritis, we would start decreasing her medicines and eventually she would be medicine free. Well, I honestly believed that would happen BUT we have learned recently that the arthritis is still affecting her little body. Over the summer she had complained of her left knee hurting every now and then and if she hits it or moves it a certain way she will complain. She does not like to walk long distances and will ask to be carried because she will say her knee or feet hurt. There is a little fluid on her knee but not enough to be a major concern. She also has just recently started complaining of neck pain, mostly when she is looking down while writing, working a puzzle, coloring, etc. I tried to ignore it as first and was in denial about it being arthritis, but now she tells me at least once a day that her neck is hurting. We had an appointment with her Rheumatologist last week and it was confirmed that she does indeed have arthritis in her neck. She also had Physical Therapy after her Dr. appointment and the PT did all kind of measurements and exercises with her neck and said that her range of motion for her neck is not where it is supposed to be. Although I knew it already, it still broke my heart to hear. I was so looking forward to taking her off of the medicines or at least decreasing them so her little body could have a break. The Dr. told us that having arthritis in the neck was very concerning to her. We are not allowed to do gymnastics etc, until her neck is showing some improvement :( The PT gave us some daily exercises to do for her neck and some for her hamstrings as well. The muscles in her legs are tight so we need to work on this and try to get her muscles stretched out. We also have a shoe lift for her to put in her right show because due to the inflammation in her left knee, that leg is longer than the right and it throws her off while walking, etc. I am ok with this, I was assured this will eventually resolve itself!



I am really heart broken over this, I know it could be worse but it still hurts when it is your child and when you have to watch them cry and plead with you to NOT give the shots every week. At times, I lie in bed at night and cry thinking of what these medicines might do to her body in the future. It breaks my heart that she may have to deal with this her WHOLE ENTIRE LIFE, she was diagnosed as a baby, it is just not fair. I wish there were some way I could take her place. So as of now the plan is to stay on the same medicines, we actually increased the dosage so she is taking the max dose for her weight. We will re-evaluate everything when we go back in February. Until then we will still have our eye appointments and routine lab work to make sure everything is okay.




I am sorry for being such a downer with this post, but some people just don't "get it". For example on Halloween, Ayla walked half way around our subdivision and then wanted her Daddy to carry her, she did not feel like walking. So as John is carrying her someone passing out the candy made a smart remark like, "isn't she old enough to walk herself", I was very proud that John did not say anything back, because he definitely wanted to. I was thinking to myself Lady if you had arthritis and it is cold outside, your body may be hurting you too but I didn't say it, just kept walking. Another JRA mom says it best on her blog, "Our Journey with Arthritis",

"Some of you may think that arthritis is no big deal. It's not cancer right? How can it possibly be a life threatening issue? Cancer kills people, arthritis does not. Can I tell you how WRONG you are? If you have a healthy child, be thankful. And while you are being thankful for your healthy child(ren) please say a prayer for the children that are not."

Anyway, I am a positive person most of the time, but we ALL have our moments! Here are a couple of pictures of me and the kids at the beginning of the appointment (remember its almost a 4 hour drive)



and here is one towards the

Even though there are some people who do not fully grasp what we go through or what "Juvenile Rheumatoid Arthritis" means, I know there are alot of you that are praying for my sweet Ayla, I have support from family, friends, and other JRA moms I have met, and for that, I am very thankful!

Trick or Treat ( a little late)

The kids had a great time this year, they actually "got it" for the first time and it was sooo fun to watch! Brennan was the trick or treat pro, he was the leader of the pack and was always first to say "trick or treat". He is so funny, one lady passing out candy had grey wavy hair, the first thing he said when he walked up to her was "George Washington", omg John and I could not stop laughing, it was hilarious but she had no idea what he was talking about. He knows what all the Presidents look like, lol.


And here is my Prince and Princess!




So Ayla changed her mind a few hundred times about what she wanted to be for Halloween. She wanted to be a cheerleader for the longest time because Kaleb's girlfriend is a cheerleader and she loves going to games and watching the cheerleaders. Of course I try to steer her in that direction as well since I was a cheerleader at one time (many, many years ago ) After I searched forever and finally found her a cheerleader outfit she then decided she wanted to be a princess. She wanted to be each and every one of them but finally decided on Ariel. Her Mama Sandy had bought her the gorgeous Ariel dress for her birthday so Ariel it was! She did however get to wear her Cheerleading costume at a Halloween Party on Saturday night so it all worked out!






Brennan did not care what he was, he still doesn't get that part so we decided to make him "Prince Charming" and I have to say he pulled it off very well! What a handsome Prince Charming he made!



While we were out trick or treating big brother Kaleb decided that he wanted to get in on the fun. We were in stitches laughing when we saw him walking down the street in his bathrobe and wild crazy hair. He said this was his "just got out of bed look",lol.





The kids got enough Candy to last until next Halloween, our subdivision gets around four hundred trick or treater's so it is a ton of fun. Our neighborhood is nice because there are so many young kids right now, Ayla's best friend Hilary lives only two houses down. Most of the pics are all neighborhood kids and friends! It was such a fun night, I look forward to many more in the future!