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

Thursday, July 31, 2014

Memorial for a little Classmate...

This morning the boys and I went to the Memorial for sweet little Elina who passed away 2 weeks ago at age 6. 
I would lie if I said I knew the Family. I know I met them during school events and I remember precious Elina from last years Christmas Play where she played a little lost Angel.
We went this morning due to the boys asking me to take them. The Church where it was held was packed and it showed how loved this Family is by the Community. 
I admit I think another reason for such a huge attendance is also due to nothing shaking up a  Community more then the death of a child.

 I would not have gone if it had not been for the boys. To walk into the church and see this tiny casket is just wrong on every level of my being.
Considering our family history it is even more so a hard pill to swallow when listening to the supposed gift it is that she is now in heaven. To hear she is happier now then she ever was... that this is a reason to celebrate and that the grieve felt now is only a sting that is a very short temporary event....

I sat there being grateful in the Families strong believe as I hope this will indeed carry them through this horrid time.

I can't imagine a greater pain, plus I would imagine it to last every minute, every hour, everyday until I took my last breath. If in temporary they mean life, then temporary would mean years and years unless my death came shortly after that of my child.
Connor and Alexander were very upset when we left. Connor said the pain if he lost Alexander would be way worse then a sting. He told me he would feel as if someone took out his heart....

So again I wonder how we can be so different in not seeing the supposed comfort?


My wish to this beautiful family is strength and peace for the coming years.

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