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Friday, October 11, 2013

Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 
We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.


8 comments:

  1. I was at the NIH last year and it was amazing, such a wonderful place, if you feel lead there, go for it, sending you and parker prayers and hugs

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    1. Thank you so much for the encouragement, kindness, and prayers.

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  2. NIH is an amazing place. Keeping you all in my prayers! Tell Parker he is an inspiration!

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    1. I am so glad to hear that folks have been happy with the NIH. Parker was involved with one study through there but all was done locally. Thanks so much for your kind words. I so appreciate it.

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  3. You don't know me but I've followed Parker's story for a long time now. I'm a friend of the Howe's and I work with the JAA. I've had JRA since I was 7 and they pulled me out of school in 8th grade because they didn't have biologics just yet and I wasn't responding to anything they did have. I feel so many things when I read your updates about your family. It really brings back memories, good and bad. I'm so sorry things are going this way. Parker is so very brave. I hope the Acupuncture does keep working. I've gotten it on my shoulders before so I know just how brave he is. I hope there is some light at the end of this tunnel soon! Please give Parker a hug for me and one for yourself too.

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    1. Any friends of the Howe's are friends of ours. Thank you for your advocacy with JAA. It is encouraging to hear about your experience and memories. He has now gone for his second acupuncture apt and so far so good. Katie, I so appreciate you posting and thank you so much for your work with JAA and for sharing a piece of you with us. I hope that your current treatment is working. Much love.

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  4. We had to withdraw our son two years ago. With some homeschooling, he may not have to repeat a grade--it takes far less time than being in school and saves a lot of energy. We're using Teaching Textbooks for math, Sonlight for history/lit, for example. I know how difficult it is for your child (and you) to be that sick--hoping for the very best for him!

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    1. So you definitely understand how hard it is...Parker actually spent the last 2 years in hospital homebound and did a bit of on-line virtual school. He was so very excited about finally returning to school...but I think he is at peace with this decision. He is really concentrating on his health and we have increased his PT. Taking one day at a time. I hope your son is doing ok and hugs to you. Thanks so much for sharing.

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