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

Thursday, April 17, 2014

Some tears and disappointments....

This week the boys had their follow up appointment for their surgeries.

I had gotten the date for April 15 when I called the office right after the boys had their surgeries and the scheduler told me to bring them in that day. Now my post op notes said to bring them in 4 to 5 weeks after surgery to change the casts. I had told them on the phone that April 14 is to soon and puts us into week 3. She corrected me twice saying that I was wrong and that we need to be in this week.

Well, we arrived, waited in the waiting room and then were taken to the room. The boys were super excited all day because they be getting casts they could walk on. It was truly all they could talk about since going to bed the night before. After waiting another 20 min the nurse came in and apologized that today they would not get new casts because we are one week to early...... The boys started crying and we all were not very happy at the news. The nurse was super nice and it was not her fault but I was upset since I had told the scheduler that this would be the wrong week. So off I went to reschedule while Ron loaded up the boys. I found out that all the appointments were gone for next week but that they would have to double book us now for the 23rd. So sorry to whoever has an app now for their kids on the 23rd as I am sure there will be a backup.

I think with all that we juggle at home it really is a let down when mistakes like these happen. I was mad at myself as I knew better but once again let my guard down and trusted that the scheduler knew what she was talking about. 3 hours of being in the car, 1 hour of being in the office makes 4 hours that included our boys ending up in tears. 

On a good note, last week the boys got to visit their class at school and we brough Chocolate covered Strawberries along. Lots of wonderful new signatures for their casts and a fun visit for us :)





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