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, August 31, 2011

Getting in the swing of things :)

So we are now into our second week of school with life that comes with it and so far so good!

I am happy to report that Connor and Alexander LOVE school, adore Mrs. Struble and even got so motivated from German School that Connor wrote his first letter in German, which will be mailed to his Oma tomorrow :)
I was also happy to hear to be told the boys acted very mature in school and had very good manners! and NOT even one trip yet to talk to the Principle ... let's keep our fingers grossed that there will be no more decorating the boys bathroom with Soap as Alexander seemed called to do two years ago :)

I am also happy that we seem to find a great rhythm to get some school here at home done as well, during Cottage School. We decided it might be beneficial to actually get up when most people do, so I have been declined to wake up around 6 to 6:30 for a workout and some quiet Coffee time before turning on the Intercom Speakers throughout the house with Music. Yesterday we had John Denver, in honor of living in CO, and today we started out with the Beatles ;) The boys love it and actually come bouncing up the stairs with smiley faces. This way we actually make it into the School Room by around 8:30 (shocking, I know!).

Of course, JDM is still a part of us and I decided to move Connor's Chemo Shot from Tuesdays to Wednesday as he sometimes does not to well at all the day after and I did not want his second Cottage School Day to be impacted by this. So we are now on a Wednesday schedule which of course means when he comes home Wednesdays he still has to face 'Shot Day'. We however have found a way to take the edge of - THANKS to Kim Miller who told us a most wonderful secret. We bought a big bag of War Heads Sour Bonbon's and I tell Connor to put one in his mouth about 2 to 3 seconds before I inject him and VOLA ... he does not feel the needle go in! Now he does gets a fair amount of Merhrotrexate so it takes time to inject and he does feel it towards the end but still it has made it so much easier.

Now there is another factor we knew we would have to face and that was the going back to school and possibly getting sick. Well, as of tonight Connor complained about a sore throat and he is stuffy with a plucked up nose. We are however braced for this and we are happy to say we will have 5 days to ride this out before faced with going to school again. This Saturday will be no German School do to the Labor Holiday so this is actually a good thing :)

We are also spreading out the IVIG Infusions again to six weeks and we are now in week five. This puts us in the dilemma of needing Connor's Port Flushed every four weeks so it won't stop working. We now have to go to C-Springs tomorrow to the Center of Cancer and Blood Disorders to have it flushed, since we are already at week five and then come back next week for the Infusion. Never did I say our life is boring ...

Hope all our friends with kids had a great back to school experience and that the transition from summer to school went smooth.

Hugs,

R A C A

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