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, September 14, 2012

Focusing on the good things today ....

Now this should be hard for me to do with all that is going on around me but I am actually going to have fun just writing about nice things today :)

For one, Alexander and I had some very nice one on one time today. Well to be correct some of this time was spend with the Therapist Alexander will start seeing about his ADHD and some of his OCD, which I know he must have both inherited from me ;) Well my issues are not buttons but I know my mind can be all over the place and I do have huge issues with table settings and how my kitchen is set up ... especially my Dishwasher!!!!
The meeting with Mr. Chris was great and I think he will have some good ideas on how to help Alexander (and on the sideline me!) help to focus ;)

Afterwards, Alexander and I went to Starbucks for some Hot Chocolates and some fun conversations. It was lovely to see how plugged in my youngest is when he started the conversation about Libya and the movie that prompted all this out rage. i am not going to go more into detail as I said I want today's post to be only happy news but I was happy to see how insightful Alexander was and that he had some really great points to this matter.

On this regard I was thrilled that this week I got to see and witness several compliment coming our way in regards to our two dumplings. One e-mail from the teacher the boys see about their language skills mentioned them as quite bright, they have done excellent in the test about their speech and listening parts and their listening skills during instructions and stories were superb.
Now these above were not my words but came form the school! That made me a very proud mommy!
Then Mr. Chris at today's evaluation of Alexander told me at the end that he saw a very bright child in Alexander and that it would not surprise him to see his intelligence level is very high as is the case with many ADHD children and Adults.
So here you have it. We are all walking taller today - haha

the boys also had a lot of fun trying to build a Bobsled and I for one was grateful it did NOT work - haha.

P.S. On the Voting and Sharing front for the Chase Grants we are still lacking and if you are my friend on FB PLEASE go to my Wall and look at pictures there of three beautiful and precious kids that did not survive JDM/JM! We need a Cure and I know you have it in you to share the message and get your family and friends to Vote! Thank You!!!


Below I am going to post some pictures of the work the boys have been doing at school. Not all the spelling is correct but I think you get an idea of how much thought they put into their work :)















Hugs,

R A C A


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