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

Saturday, April 21, 2012

TCH and times with Friends!

Oh how much can happen all in one day!

Two days ago Kim and Grant arrived at our home and yesterday we all headed to TCH for Connor and Grants appointment with our precious Dr. Soep.
Connor got nothing but great news when we were told that we could stop the Cyclosporin (4 less pills to take each day!!!) and that Dr. Soep will talk to the Surgery Department and schedule Connor for his Port removal that might happen in two to three weeks!!!!!!!!!!!!!
This is thrilling news as we were also told that if his blood levels are looking good and steady in two to three weeks then we will also continue tapering the Prednisone :) Truly all of this made me so happy insight as I feel we are looking at our biggest break through yet. Connor will externally look like every other child  and the only thing that will stay around are his Methrotrexate Pills (Chemo) once a week and of course the supplements to counteract some Chemo side effects as in Folic Acid, Ergocalciferol, Tums and Multi Vitamin :)
We happily take all that!

Now no visit to any place goes without some excitement of course, and this time was no exception. We had just passed Castle Rock on our way to TCH when Connor squealed he had a spider or bug on his belly. Kim took a look and there was no spider or bug exactly but a yucky Tick. So figuring we were on our way to a hospital we kept going and told him to ignore it. Well if you know Connor that is easier said then done and we had to take the rest of the drive to try and calm down his nerves.
We arrived and the big surprise was that Ticks are not that common a occurrence at the Infusion/Oncology Floor - haha :) It took quiet a bit of work and time to work on a Tick that did not want to let go. So the nurses soaked her in Alcohol, when this did not work they slathered her in Vaseline, still no letting go of Connor's belly. Kim told them to try and use a silver nitrate stick that is used to cauterize and touch the back of the tick with it. Well in the end it was Kim's initiative and taking over the stick and the tweezers that got out this wicked Tick. So you can guess who was Connor's ultimate Hero yesterday!

After our excitement we all went to have some well deserved Gelato followed by meeting Friends of Kim and Grant for dinner at the Yard House who had moved from Chicago to Golden two years ago.
The night ended with some fun play time and even an exercise trip to the Amphibian Theater at the Red Rocks in Golden. What a beautiful place and Conor ran up and down the steps twice! Kim, Alexander and I went once and I am counting this as an exercises as my lungs and heart were given a huge workout :)













Hugs,
R A C A

1 comment:

  1. I love Red Rocks! And I LOVE this news. And EWWWWWW! Ticks!! EEEWWWWWWW!

    ReplyDelete