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, June 21, 2011

Ron's Surgery up-date ...

Thank You to so many of you that have asked how Ron was doing and I thought it was time to send out a new up-date.



Ron had a post op visit on Monday and there we learned that the surgery was more intensive then anticipated. Yes, they did take care of the initial problem of removing inflamed muscle tissue and lots of scar tissue around the Rotators Cuff but the Surgeon also saw that Ron's Bicep Muscles was so frayed and inflamed that he had to cut it, remove the frayed section and then reattached it. The result is that Ron is not allowed to move or use his arm at all for three weeks, and for the following three weeks there after he will not be allowed to reach, stretch or pull with his arm. Total recovery time is estimated at 9 to 12 months. These are just the facts but reality is that Ron is in a lot of pain and discomfort. He is on a strict schedule of pain medications every 4 hours and has to ice his shoulder in 20 minutes intervals.

Here is a medical description of what Ron has:


Biceps tenodesis. In some cases, the damaged section of the biceps is removed, and the remaining tendon is reattached to the upper arm bone (humerus). This procedure is called a biceps tenodesis. Removing the painful part of the biceps usually resolves symptoms and restores normal function.
Depending on your situation, your surgeon may choose to do this procedure arthroscopically or through an open incision.



Sam and RW are still here for their visit and RW has also been a concern for the last few days. As a cancer patient his immune system is of course very compromised and he has been complaining about a sore throat. You know from my writings about Connor how even a simple sore throat can be a major problem. There is also some concern about the altitude we live at since he is also experimenting severe headaches. Sam tried to convince him to go and see a Doctor but he is not ready to see one just yet. In a sense it is understandable as I am sure he is tired of seeing doctors but I also feel for Sam because I know how worried I get when Connor gets sick.

So the last few days have been busy but also in a strange way very out of sync for all of us. We all are feeling tired and are taking daily naps, with the interruptions of phone calls of course :) it is wonderful to be around people we love and I am asking you tonight to keep Ron and RW in your thoughts for a speedy recovery for both. I wish we could dream for remission for RW but sadly that is not in our reach. So we cherish our time with each other as much as we can.

The CureJM Conference is coming up on the 23rd to the 25th in Seattle and as you might know we had planned to attend. I kept the door open on our travel plans until I knew better what the surgery entailed and what the outcome would be. Now as much as I wished to be there and hear the top three doctors talk (Dr. Pachman, Dr. Rider & Dr. Reed) about the progress made in the Research Department and meeting fellow J(D)M Families, it is not important enough to be there knowing in how much pain my husband is in.
Life as always is about priorities and if we learned one thing then FAMILY & FRIENDS are it.

Wishing you all a great start into Summer!

Hugs,

R A C A

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