Nov 11, 2010

An update on Ayla's Arthritis

A very long day at Ayla's Rheumatology appointment!

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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!

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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.

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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)

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and here is one towards the end..lol

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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!

10 comments:

Paige said...

I cannot imagine how she feels on days, and how you hurt for her as a Mother. Praying for Ayla and your family.

Robin said...

praying for all of you to get through the days with as little pain as possible.

Stephanie said...

I'm so sorry Ayla is still hurting. She is such a strong little girl :)

I totally would have said something to that lady. How rude.

I'm praying for Ayla.

Allyson said...

Bless Ayla's heart! I am sorry for all that she has to go through. She is such a brave little girl.

Amanda M. said...

I would like to come to your neighborhood and slap silly the person who made that remark.

I cannot imagine the pain Ayla deals with. I cannot imagine, as a mother, how your heart must break into a million little pieces each time you see her in pain. My own heart is broken right now reading this, and Ayla isn't even mine. I am amazed by your strength and by Ayla's. And I can promise you that you have a family here who is praying for yours. XOXO

Deetipton said...

Don't feel bad for "being a downer"! These are the things that people need to know. Our kids are so strong, so brave, and such amazing spirits. I believe that they are "God's Chosen". For us, in some ways JA has been a blessing. But seeing my little one hurt, seeing her on the days when she can't walk, or pull the cap off of a marker... I'm a very positive, blessed and thankful person, but I find myself crying a LOT for my child. Maybe it's because I don't have time for a breakdown; I don't know. All I know is that it breaks my heart to see my child, and every other child that has to go through these chronic pain/ autoimmune diseases. And, because you are made stronger by her strength, you'll get through it just fine, one day at a time. <3

Courtney said...

You gave me a shout out!! Thanks for that! Our kids are amazing little people. I am in absolute awe of each and every one of them.

Erika said...

We get permission to have a myriad of feelings watching our children go through the pain & confusion of childhood arthritis. We totally do, and we dont have to apologize.... and boy that woman and her judgement on Halloween!!! Oh my word, next time DO say something, and there will be a next time. Or an opportunity to share that story with someone so they know not to judge other children or families. You never know what another family is going through, ever... i think this disease has definitely taught us that and in turn we are showing others that they might never know, but cut people some slack and turn off the judgement ticker in your head... Just by sharing that story on here, you have shared that with people! Thank you!!! Take care and have a VERY merry Christmas with your beautiful cherubs!!!

Amelia's Corner said...

I love you. You are a great Mom.

Leah said...

Oh Leslie... Our journeys are so similar, we really should talk after the holidays, love and hugs to you and your family.