Our Journey thru JDM and Life!: Back to 'Normal' & Stair Video

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)-

Monday, May 24, 2010

Back to 'Normal' & Stair Video

I am thinking that I have not been very specific on my blog on how much progress Connor is making. I thought I was :) BUT I realize by the comments I get from everyone that has seen Connor the last few days that they were all quiet surprised and even shocked how well he is doing.

So I am trying to say how mobile he is getting. He is running in his little funny way. Not as fast as other kids and no long distances but never less he does a good job. In the last week he went from me guiding him up and down stairs to walking stairs completely independent. He holds on to the railing but he is in the habit now to going back downstairs to play in his playroom. I am not ready to move all the toys back downstairs or move the classroom back to the loft schoolroom but we are getting very close.

I truly in my heart felt the first huge change in Connor when he had his first IVIG. He had three so far and we are scheduled for a fourth on June 3 and I can not wait to see what happens next.

Here is my IVIG buildup:

The 1st IVIG got him out of his wheelchair trying to walk.

The 2nd IVIG got him to sit on the floor and be able to get himself up again without another persons assistance (at first he pulled himself up and now he can get up independently unless he gets tired)

The 3rd IVIG had him climbing stairs and running.

So you can guess what the options are after his 4th IVIG :):):)

I am going to try and see if I can make a video and attach it.

Before I sign off I want to say THANK YOU to Miss Shelly, Miss Clare and Alexander for coming over yesterday. They got to see Connor, Alexander and I at our best - NOT. We had scheduled a playtime and some fun Girl Time for me and after busy days on Friday and Saturday we were so exhausted and Alexander and I were like Oil and Water. So you know your true friends when they come to your home and see us all stressed out and still tell us on the way out that they had a good time ... oh, now that I think about the real proof will be if they come back someday - Haha

Hugs,

R A C A