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

Friday, July 16, 2010

Camp Day's





Officially Camp is over unless you are in Drama Class, because for Connor there still is Dress Rehearsal tomorrow and then the Musical will be on Sunday at 6 PM. I have to admit I am quit curious as to what the outcome will be since at first I was told the little ones would just sing in the background but now Connor got his one speaking role so he is very excited.

It was a bit of an up and down the last two days for Connor. Yesterday he did not want to go to Camp at all and when I asked him why he said there was this one girl that was mean to him. I told him he had to speak up for himself and if she was still being mean to him (which he said was her making faces) then I said he needed to talk to a coach. Well, he was in tears when I dropped him off and I felt bad for telling him he needed to stick it out but of course when I picked him up he was happy and told me the girl had been nice today.
Today he was a bit hesitant at going again and I was playing with fire but told him if he preferred to stay home he could and he said 'no I need to practice since I am a part of the Play'. So all went well and now he is very much looking forward to Sundays performance.

There was also one little concern about Connor and him coming down with a head cold on his second day of camp. He has a stuffy nose, had a sore throat and is coughing but NO fever. Of course I was getting very paranoid so called Dr. Soep's Nurse Michelle as to what I should be doing or looking for since this was my worry all along that he would catch something the moment I expose him to people outside our family. Michelle was of course able to calm me down and told me to treat his cold as I would normally and to watch for a fever and also to not give him any Sudafed at all. I truly wonder how all my JDM friends do this who have their kids in school and other activities. The Camp of course was my first reach out to something like that and I have to say I am still weary....

Alexander finished his Sports Basketball Camp today and LOVED it. He said he wants to go to Basketball Camp again next year and this alone is amazing because so far no sport we exposed our boys to took a hold. So maybe Basketball it is :) I am still hoping for Ice Hockey, thought - haha

To celebrate our boys Graduation we went to Cripple Creek for a tour at the Jail House which proofed again what great little character actors I have, a visit to the Old Fashioned Candy Store and then we all got treated to a Dinner at our favorite 'Ralph's' from Auntie Sam and Uncle Ron :) A great finish to a busy but fun week. Oh and best of all for me ... after living here in Colorado now for almost three years I finally got to see Cripple Creeks Wild Donkey's. They walked right passed our car and they were so close we could have touched them .. PRECIOUS :)

Ron right now is on his way to Anchorage, Alaska and I admit to being jealous that he gets to see and spend time with Niki and Harlow. How I wish we could have gone with him but I am not giving up and I am sure it will happen before the summer is over :)

Wishing all of you a great weekend!

Hugs,

R A C A


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