Our Journey thru JDM and Life!: Between Day 5 and 6

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, February 1, 2010

Between Day 5 and 6

So I was mentioning earlier I was hoping for a better day tomorrow and I am not giving up on this hope but for now tonight seems to be a challenge.

Connor woke up at 8 PM for his vitals and medicine time and has not gone back to sleep as of 10 PM now. He is unhappy about a lot of things today but to top it all off he just got a room mate who is on oxygen. The machine he is using is noisy and what is Connor's biggest complain since he got sick is the sensitivity about hearing noise! Earlier he complained about people talking in the room next to us. To give him credit I told him that this poor boys is very sick and needs the machine that is making all this noise and he hasn't said a word since. However it is 10 PM now and he asked to watch a movie.... so I am guessing it will be a L O N G night for us....

Up-Date... Connor's room mate has Asthma and they give him oxygen every 2 hours for about 3 minutes. This would not be bad BUT this boy talks non stop and everyone is so so noisy tonight... It is a good thing Connor is sleeping or I would feel like loosing it tonight....

So I do not give good ratings to the night shift these last two nights.........!!!! oh, yes it is 12:50 AM, so really we are at Day 6 now....

I did not realize that venting on this blog would feel so good :)

Another Up-Date... it is 3:44 AM and I am watching 'Footloose" right now... on the bright side Connor is sleeping :)

Up-Date # 3... I think this night will never end... At 4:22 AM I was informed that we will be moving from floor 9 to floor 4 within an hour. They need Connor's room for an NICU Patient and they now have room on the 4th floor where the Rheumatology Department is located. Connor is awake and excited about moving (so this means he is in a good mood as of now :) and the reason is that floor # 4 is closer to floor # 5 which has the playroom..... Kids are after all easy to please :)

Hugs,

R A C A