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

Wednesday, June 2, 2010

Part 2 of our TX Mini Vacation and back Home again :)

Here we are sitting on an Airplane again but this time heading for Home :)


Yesterday, Memorial Day, was a lot of fun as well but I can tell you the energy levels were much lower the second day. We all slept in and then had a slow and leisurely breakfast at the Hotel. The boys and I left for the Mall the same time Ron had to leave for the Academy for his training. We met Sonya, Addie and Ren to see the new Shreck movie which was very cute and I can say the Witches were no issue at all. This time I brought the Wheel Chair because Connor was sore when he woke up in the morning but the irony is that Alexander was so tired from the day before that we actually ended up taking turns with the Chair. Connor got to sit in it about 70% of the time but had to share with Alexander as well :)

We ended our Day with meeting part of our Texas ‘Family’, Len, Angela, Alisha, Kendra & Rebecca for Dinner. Our boys by far got a huge boost of energy right before we went downstairs for Dinner and it lasted all the way through it. You all know I can talk BUT my goodness they were each going about one mile a minute. Do you know what a tightrope you walk when you have two talk active six year olds that have no care or sensitivity levels for what comes out of their mouths?


So after a restless night for two of us and a good night for the other two we are now on our way back Home. There was a 30 min delay leaving DFW due to a wet carpet in the First Class Galley but we were happily seated in Row 7 and 8 in coach on a flight that was only 2/3 full :) and other then some boredom for our two dumplings we passed this time delay easily.


Now we have one day, today, with Ron at Home and then he will be of to Paris tomorrow morning. We are glad to come home but I admit the Gypsy in me is waking up again after a 6 months break and some Ice Cream under the Eiffel Tower does sound tempting :) Okay, maybe we are not there yet with Connor but this trip to Texas opened my eyes that we are one step closer again to having part or our Life from prior JDM back bit by bit :)


...... Day 3 ...I was going to post this blog when we got home but we got busy cleaning out the garage and also taking the boys for a ride on the 4-Wheelers. The part I could have skipped is Alexander ran a fever last night and was hallucinating or sleepwalking on top of it. Now this morning he is doing much better with a low grade fever of 99.8’F.


As to some future planning I got to talk again to Dr. Rider today and depending what Dr. Soep say’s tomorrow for Connor’s fourth IVIG we might be making plan’s soon to travel to Washington DC to enter Connor and Alexander in the Twin Study and possibly as well into the Myositis Study.


You all might wonder now what some of my posts have to do with Connor and JDM and I guess I keep writing about our Family Adventures because this is a look into how much progress or not we are making to getting back into our old life :)


I wish I could put in words how wonderful those two days were for us here in Texas! We had a precious time and it once again showed us how blessed we are with having this amazing network of friends and family.

So Thank You to all of you that took time for us while we swooped in :)


Hugs,


R A C A

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