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

Sunday, March 7, 2010

Day 39 / 19 at TCH




For those of you counting tomorrow will be our tie with Chicago's Memorial Hospital and the time spend now at The Children's Hospital in Denver. 20 days each ...

At first I was tempted to write about how the two Hospitals compare but I think since we are still at TCH we will leave that until we are home :)

Connor ones again had therapy .. no breaks for him even on a Sunday, so he had Speech, OT and PT again and Ron went with him and learned a lesson when Connor beat him twice at Tic Tac Toe. All three session were all in a row and very exhausting for Connor and Ron said he only got his smile back when he heard he was done for today. So to celebrate they went for a walk in the Park :)
Today also has been day two on his new medication that was added plus the daily pill he gets to help reduce his blood pressure. I think I can write that we are looking forward to see what Connor's next blood test reveals.

As a treat Connor got a visit today from some Movie Characters that I know meant the world to him. We as parents know and you all due to my many postings about this, that Star Wars is untouchable the favorite theme for our boys. So when Ron called and e-mailed me the pictures I was more then thrilled for Connor. Alexander already got lucky when he went to Anchorage with Ron and got to see the Star Wars Exhibit with Celeste & Tyler so this was wonderful timing :)

Tonight Ron got to meet the Stenzel family for the first time who came to the Hospital for a visit bearing dinner in the form of Chipotle for Ron and a Burger for Connor :) Connor just loves Emma so it was a happy time for him :)

Here at home today was as much a day back to normal as can be at this point. For the first time in 40 days I was back to baking ... ironic it took so long to get back to it when this is all I did when Connor started getting very sick mid December and no one was really listening to us and we were worried to no end. I don't want to even mention how many cookies we had this last Christmas .....
We also received the wonderful gift of Pizza's today from the lovely Soderstrom Family (Carol & Robert). Talk about comfort food :) THANK YOU. My Mom has been looking at the food we have received and she said to tell our wonderful friends that she is here now and can cook and I told her that the four of us are in pure heaven because of all their help but that I love seeing her sit down and get a break as well so tonight for once she did :) Alexander I have to say other then being sick with a fever, cough and runny nose has been soaking up all the attention he his getting now. He deserves it and it is great to see him back on schedule and eating well. He has been getting all his favorite foods from my Mom, Griesbrei and my Mom's famous Tomato Soup with Butter Dumplings.

Tomorrow Ron and I are changing guards again and I will stay with Connor until Thursday. I hope Ron will be able to slow down a bit and take a break when he is home which is hard to do since there is so much catching up to do ....

Hugs,
R A C A

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