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

Tuesday, August 3, 2010

IVIG # 7 at TCH August 3 2010












Today we are back at TCH for Connor's 7th IVIG Infusion and everything is going smoothly so far.
First of all I am so grateful to my wonderful husband for being able to move his trip so he could come home for just 'one' day to be home with Alexander. It makes it much easier on me to just have Connor on our trips to TCH since it is a bit of a challenge to keep Alexander occupied for 6 to 8 hours when the only place you can be is the Infusion Floor. I do have to say however that it is a wonderful setup here with Miss Pat being on hand all morning to supple the kids with Arts and Crafts and taking the time to sit with them and play. Today Connor had his Nurse and Miss Pat singing along to the song 'Fireflies' by Owl City while his Port was being accessed. Thank Goodness for Internet Access and UTube who let us play the song and Video over and over again until it was done :)
There also is a very nice playroom here that supplies Games and Toys for the kids who get the Infusions but also most importantly helps all the siblings that have to come along to be occupied for a bit. On top of this we have an elderly Gentleman who makes rounds with a book cart and hands out books plus of course each room has an X-Box for playing games or watch DVDs. So truly it is the best setup we could wish for you if you have to make a trip to the Hospital....

Connor already painted a wooden puppy, watched 1/3 of the movie 'A Knights Tale' and is now playing in the play room with the Potato Head Family while singing Fireflies. There also is a group of boys making a turn around the floor offering cookies, Ice Tea, Water or Coffee on a card to everyone.... The Spirit of all the kids here is and always will amaze me. I think every person should have the ability to Volunteer on the Oncology Ward or an Infusion Center in a Children's Hospital to really feel what it is like or I guess you can join us some day and Connor will give you a tour :)

Ron and Alexander will actually spend some time at the Doctor as well since Alexander will have a Check-Up with Dr. Young this afternoon. I am curious to hear how this goes... we are still trying to see what we can do to help Alexander to calm down and get his body and mind into focus. I said it so many times and I will keep voicing this until I get an answer to why he is moving so fast all the time. He talks fast, he moves constantly, he eats fast and he even fidgets and moves all night while sleeping. This brings me to the question as to how much real sleep does he get when he is in constant motion?

One of the pictures I posted shows the boys in their new Alaska Jackets and Hats they got from Ron. I tell you it is hard for Ron to go an trips anymore and not have the boys jump all over him wanting to have a surprise brought back each and every time. All those great intention of not falling into this trap are hard to follow. I got treated to Alaskan Chocolates and Hot Chocolate with Blue Berries :)

Wishing You a good Day!

Hugs,

R A C A

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