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, September 21, 2012

Infusion # 4 since Flare

Today's Infusion Day started out very well and Connor's poor Nurse was on pins and needles after Connor asked her if she will cause him to bleed all over again. Talk about adding some pressure to her morning! She said she was concerned about this all week and was hoping today would be her and his lucky day.
We were thrilled for her that she did indeed get the IV in without a bloody little mess but we had to laugh when she then realized the hookup was backwards for the blood draw. Luckily she was still able to fill her 5 tubes and Connor was set up for his Solumedrol Infusion, followed by the Methrotrexate. He also tried to cover his metal taste by inhaling 4 Cheddar Cheese Sticks and we were on our way out of TCH for our traditional lunch by noon!
This time Connor wanted to eat at the 'Buffalo Place' at the Briargate Pkwy Center which turned out be Ted's Bar and Grill. It was very nice and I have to say there is a strange kind of upside that comes with my poor babies needing medical care and that is the traditional Lunch or Coffee and Cake Dates that follows each Appointment!
It is very cute and fun to have this one on one time and they take it very serious as in always opening the door for me and having wonderful conversation pieces.
Next week he wants to choose a Mexican Restaurant after we had Chinese last week and I was worried at first when we saw a Police Car parked at my beloved Apple Store only to realize they were there for crowd control about the new iPhone.

After we left, the Day's Event took his toll on Connor. He napped all the way home (1 hour 15 min) and then went back to nap from about 4:30 to 5:30 pm at home. After eating very little for Dinner he went back to bed and fell asleep again only for us having to wake him up for his Medicine. He also has been complaining about a Headache all afternoon and sore throat. I am always on edge knowing that each additional Infusion strips his Immune System more and more :(

Tomorrow, I am heading to Denver with an amazing group of women for the Dirty Girl Mud Run and the boys will have a play-date with their Papa, which I think is planning on taking them to a 3D Movie :) I know they be thrilled!








Hugs,

R A C A


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