Our Journey thru JDM and Life!: Visit from Rev. & Mrs. Morgan ...

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)-

Friday, July 23, 2010

Visit from Rev. & Mrs. Morgan ...

This was Day # 2 this week with nothing on the calendar in regards to Therapy or Infusion Days but never less I had a full day planned of cleaning our House and since this is such a joy of mine - NOT - I was happy to catch a break in between cleaning by a visit from Rev. Morgan and his beautiful Wife Mrs. Morgan. Not only did they give us the gift of their company they also came bearing a delicious lunch of Scalloped Potatoes with Ham.

Connor and Alexander were happy to show them the Video we made of the Musical and also look at pictures I took during the week of camp.

It is so wonderful to have a connection with someone that is around my parents age and who I can talk to and get a feedback in regards to where my mind is wandering to. For those of you that know Rev. Morgan you also know that he is a great listener. I am not sure if he always agrees to what I throw at him but if he doesn't then he is doing a good job covering it up :)

So the good parts about today were our visitors and also that I got most of my cleaning done. The part that saddens us but is also something we have been dealing with for all of our life as an Airline Family is the fact that Ron is stuck at DFW due to a Storm moving through and messing with all the flight schedules. If we are lucky then he will be able to catch the Jump-seat on the last flight out of DFW tonight which should bring him home around 12:30 AM. Connor and Alexander put on a strong face but they were sad that they would not see Ron for Bedtime and also that they missed out on the tradition of Ron picking up Taco Bell (Tinker Bell to Alexander) for Dinner on his way home from work.

Connor also had a rough afternoon and evening so he colored the picture to show me he was not feeling well and that he was sad. He usually feels this way the day after Infusions and he uses coloring as a way to express himself even thought he voices how he feels just as well.

Alexander got to spend lots of time outside today with Apple and Tasha and overall had a really good day :)

Hugs,

R A C A