Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Wednesday, July 14, 2010

Sports Camp in Lake George Day 2 out of 4 :)



I have all the intention to talk about Sports Camp but first I have to start out and apologize to my family and everyone one else that crossed my path this morning!

Truly I am not sure what came over me but I was such a grouch this morning (well my husband might tell me I am one lots of time - haha) but this morning I was short with everyone and snippy at it's best.
I told you once about me having the Stockholm Syndrome when we 'lived' at CMH in Chicago? well, today my boys experienced it. We finally made it to the school for Day #2 of Sports Camp with about one minute to spare and when it was time for the boys to go in the center to sing a couple of songs and listen to a story they did not want to go and became very clingy. I used to be used to them being clingy two years ago and before then but we made huge progress in the last two years so it set me back. I asked them what was wrong and they said they wanted to stay with me ... now you would not have said this if you had spend this morning with me!!! I personally would not have wanted to be around me :) I told them what they preferred .. staying at Sports Camp and having fun of spending more time with a Mom who is not being nice this morning and they said 'with you Mommy' ... see Stockholm Syndrome at it's best :)
I have to say luckily they decided to stay and after I went to Woodland Park for errands I was starting to feel better. I would have loved a good argument this morning but no one was ready to go into battle with me today :)

The boys love Sports Camp and so far Alexander seems to learn something about Basketball but he was a bit upset that he missed day 1 of Camp because this is when all the kids supposedly learned how to dribble a ball. Connor is enjoying Drama and he was assigned a role today of Water Boy in the Musical. He is very proud of his one line ... 'Water, Water ... Water for everyone' at least this is what he told me :)

I have no real updates about my Dad at this point as he did not go into surgery as planned this morning but instead had some tests done on his bladder. He was unhappy when I talked to him this morning because he had 'planned' to go home today and now he told me he had to stay one more day. I wish I was as optimistic as him but figure he might stay longer then two nights. I so wish I could be there!

Also please send some positive thoughts and prayers to the Howison Family, especially Hope's Grandma who is still in the Hospital and ICU with some complications from her surgery. There is one family that deserves a break for sure so any help from your end is greatly appreciated!

and finally I better add the link to Vote for CureJM to win the Pepsi Grant on here because we really really need to win this one. JDM is the whole reason I started this Blog and I can not wait for a Cure so NO CHILD has to ever face this disease. Thank You for Voting and please keep Voting until the end of July and tell your friends and family to vote as well. I might be bugging you about this but it will be the kids that will Thank You when a Cure is found and they know you were a part of making this happen :)

www.refresheverything.com
Vote for the most refreshing ideas to win Pepsi Refresh Project grants for Health

Hugs,

R A C A

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