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

Monday, February 28, 2011

A Monday and a Funeral ...












Today I started out very energized and I feel like I got a lot done and I am not even tired yet, strange but good :)

The boys and I had school in the morning and then they went outdoors to play in their Forest with Apple and Tasha and I got some housework done as in laundry and vacuuming, PLUS paying bills.
Now, last week one of the boys school projects was learning to read different kind of maps as in a World Map, USA Map, City Map and a Blue Print of a House. Then to finish up they had to draw a map of the area where they live and write a sentence as to where their home is. Connor wrote 'We live in the middle of nowhere' and Alexander wrote 'We live on top of a mountain'. So here you have it. If you try to look us up you can find us in the middle of nowhere on top of our Mountain :)

Today of course was Sandy's Funeral and the boys were very much looking forward to it. They were truly fascinated about the Service yesterday and to see how it all ended was a big deal for them. I admit I lived in Lake George now for almost four years and this was the first time I actually saw the Cemetery and realize where is was. The sad truth is that I drove past it many, many times and I never realized it. It is of course a small cemetery but in a very nice and quiet location.
Connor and Alexander were as expected extremely fascinated on seeing the process of the casket being lowered in the ground and they had to ask the Funeral Director as in how far down it was going.
We got home about 45 minutes later and both my dumplings have been sitting down making drawings of the whole Funeral, including the Service and the last time they saw Sandy.
I also got an interesting treat as in Connor wanting to hold a Church Service for Mr Morgan in our living room. Alexander and I were the congregation and he was our Pastor. We were handed each a Bible that also functioned as a song book. It started out with him singing a song as in "Mr. Morgan you are lovely and we love you sooooo.... We know you are happy and you will be happier now ..... " and on and on for about 10 minutes. He had us recite the four prayers our boys know by heart:
'Lieber Gott sei unser Gast, Danke was Du und bescheret hast'
'Muede bin Ich geh zur Ruh, schliesse meine Auglein zu. Vater lass die Augen dein ueber meinem Bette sein'
'Ich bin klein, mein Herz ist rein, darf niemand drin wohnen als Jesus allein'
'Now I lay me down to sleep, I pray the Lord my soul to keep. Guide and Guard me through the night and wake me with the mornings light' .... AMEN.
Can you imagine the irony if one of my son's became a preacher? ;) Well, at least I could give them a run for their money trying to answer all the questions I would throw at them and then they really should be prepared to take on the masses :)

Hugs,

R A C A

P.S. the pictures are from Connor. One is of Mr. Morgan still at home but dying, one of him at Church for the Service and one of the Burial.



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