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, June 17, 2011

Shoulder Surgery & the arrival of Sam & RW

I have a lot to catch up on on my Blog, including our trip to CA, but today was all about my wonderful husband Ron and later on about having family time with his sister and her husband.

Ron went into his third shoulder surgery today and I can not tell you how much we hope that this one will do the trick and relieve him of the constant pain he has been dealing with now for years. The boys and I got Ron to the Surgery Center at noon and he went into surgery at 1 pm. While he was in surgery the boys and I went to Walgreens to fill his prescription and also catch some lunch. We got back to the Center and around 3:30 pm we got to talk to Dr. Weinstein about the surgery. He said it went well and that he hopes they took care of the problem. Ron had a lot of muscle inflammation and his bicep muscles was frayed and attached to his shoulder bone. Seeing all the inflammation it was clear why he was in pain and they hope they scrapped out most of it. The good news was that his rotators cuff was not impacted this time.
The boys and I went back into the waiting room and we were told by Ron's attending nurse around 4 pm that he was making progress waking up and was requesting a cup of coffee. Funny how things have changed from years back were all you got was ice cubes, water, sprite, crackers or Popsicles ;) now you can eat what your heart desires when you get out of surgery - haha
We finally got to see Ron in the discharge room at 4:40 pm and we were on our way home by 5:10 pm.

At home we were greeted by Sam and RW who arrived for a visit. How can I put in words how wonderful it was to hug them and have them here with us! RW, as you might remember is fighting a courageous battle against Lung Cancer. He was given 6 months to live without treatment and he has fought back and is now about 8 months into it. If you know Cancer you know how horrific the battle can be. We love him so very much and it is heaven to have them here now.

We had a pleasant dinner and of course we made an early night of it. Ron is still pretty drugged up but uncomfortable of course, RW requires more rest as well. The boys were tired from our early get up to the Farmers Market this morning to supple us with lots of fresh fruits and veggies for the coming days. I had to skip my Bronchitis medication today so I would not be to sluggish today so my lungs are rebelling again.

So lights out for us.

Love and Hugs to all of you who have been thinking of us today. As always I realize over and over again that we have the most amazing Family and Friends!!



R A C A

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