Our Journey thru JDM and Life!: 'normal life'

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)-

Thursday, February 24, 2011

'normal life'

So life for us goes on in a fairly normal pattern. Connor & Alexander are still holding on to a low grade temperature and while I started questioning our thermometer I then started taking Ron and my temperature and the reading was normal for us. Not sure why we can not get down on the fevers but otherwise the boys are acting great. They are alert for school, which is now a bit more challenging again due to the move back in First Grade. It is funny to see now how easy Kindergarten was for them as in most cases they would both sail through all the worksheets asking me not to check until they were done. Now it takes us about three hours to finish and I have to sit with them through each page. They still work independently but I have to guide them as to what is asked of them ...

The weather has been wonderful in my eyes, as it has been in the 30's and 40's each day with lot's of sunshine. Tasha and Apple love it because it means the boys spend about 1 to 2 hours each day outdoors to play with them. I love that Connor and Alexander beg me to play outside and have not asked to watch TV now for days. We even went without Video Games all of last weekend, not because I did not allow it but because they never asked for it :)

Ron got a change in scenery for his last two trips, as he is back flying to Europe this month. He went to Madrid last weekend and will head to Paris this coming weekend. Gosh, how I would LOVE to go! I admit I am lately dreaming on migrating to another country ... you know me, change of scenery could maybe change our challenges? well, one can dream - haha

Thanks to Ron being home this week we were able to finally take in Apple and Tasha for they yearly check up and all is fine except that they have to go on a Diet! I am not to surprised of course about Tasha, because she is a big, big girl. As it stands, Apple weight in at 75 lbs and Tasha at 85 lbs! Tasha should loose about 10 to 15 pounds according to the Vet, so we are now cutting back drastically on the food intake. Poor babies but we know it has to be done ...

Sandy's Funeral will be this Sunday and the boys and I will be there. I got a call from my Mom as well telling me that one of my favorite little neighbors in Germany was admitted to the Hospital as well due to a possible Stroke. She is 87 years old and very small and fragile.....

There is a certain pain when someone dies or is very sick from old age, and then there is the pain, that I have not experienced but was told, had no peace to it and was just full of agony, that's the pain you feel when you loose a child or someone in the prime of their life...

Also, my wish for this week is for people to be more tuned in to the news. So much is happening right now and it is way beyond the fact that we have to pay more when going to fill up our car. This is just an effect and reaction to what is going on. Please look at the cause and be interested. This is our life and will be part of our kids growing up. I am not trying at all to make a political statement ... I just want people to care and be informed.

I know my boys are and I am proud of them!

Pictures are one with Naoma while waiting to pick up her son. Connor and I reading from the I-Pad, The boys Graduation Certificate

and Connor's Medicine Lineup for each morning.

Hugs,

R A C A