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 15, 2010

Day 19 at CMH

So I am wondering right now if this will be our last full day here at CMH?
I would like to think it is but I am not sure if just wanting it to be will be enough :)

Rough night last night for our new room-mate. He was up most of the night getting sick. He has cancer (tumor) in his throat and got moved here from ICU yesterday afternoon.... I am wondering how much all the little faces we see here will follow us home in our thoughts... and I know already I will wonder how each of them will do in the future...

Connor got up once for the bathroom at 3 AM and went right back to sleep. He woke up at 7:30 and asked for McD's Pancakes. Right now he is watching Narnia (1st one) again which seems to be his favorite movie since we got here. I will have to see if we can find them when we are back home :)

It is 1:45 PM now and so far our day has been uneventful. Connor is feeling a bit down today and is a bit on the grouchy side. Dr. Curran came in to see him this morning and usually seeing her lights up his face but today it took a while to see a smile from him. We will get some news this afternoon if tomorrow will be a go... I for one went to the Kohl's house earlier and started packing :)

Okay, it is 8:25 PM right now and Alexander and I are at the Kohl's house slowing down. This afternoon did bring some news about what we might expect in the next few days. Dr. Curran talked to Dr. Soep from Denver's Children Hospital and they feel it would be better for Connor to travel with a Pic (sp) Line in. Connor is now on the waiting list for tomorrow which means hopefully they will have a spot open in the afternoon. He will need anesthesia for this due to his swallowing and throat issues so no food at all starting in the morning. The other option would have been a confirmed appointment on Wednesday. The only difference is if we get the Pic Line in tomorrow we can leave on Wednesday for Denver and if we schedule it for Wednesday we would leave on Thursday. I know it sounds crazy because it is just one more day but we are all getting very tired and even the chance of going home on Wednesday is worth taking it!
So no flight out tomorrow but hopefully Wednesday......

So now to the point why today finished on a most wonderful note!
Kim, the Mom of our previous room-mate not only has spoiled us with gifts and visits since her son was released on Saturday, she actually came in today to watch the boys so Ron and I could go out for Dinner. This has been the first time in 19 days that Ron and I were by our self. We haven't managed even 3 minutes of alone time before then. Now all of you that know me well know that I have never been good at leaving my boys with anyone unless I have known them for quiet a while. This shows you how comfortable we feel with someone we just met a week ago. I am guessing 'living' toegther for one week makes you bond much faster then when you just meet by chance when you are out and about. So 'no' it wasn't just us feeling desperate for some grown-up conversation - ha ha
And then to top it all off she brings me German chocolates and took home 5 bags of toys to ship home for us so we would not have to check in 9 bags. Just think we came with 4 Roller bags and the boys Spiderman School Bags and we ended up with so much!

When it was time to leave the Hospital Alexander asked if I would take him out to Dinner so we went to American Dog and he had a Hot Dog and Curly fries while he was the most charming little boy.He even asked me to dance when the Jukebox was playing :) Truly, we all found our spark again for a while ...

Please for those of you that are doing all this work at home for us PLEASE don't think we are forgetting to Thank You! Today I got an e-mail from Shelly asking me where my vacuum was so they could help clean the house... I am really wondering how come we got so lucky to have the best friends in the whole wide world.

Hugs,
R A C A

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