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

Thursday, May 31, 2012

Medi Port Removal!!!

Today, May 31, 2012, is truly a day for celebration as this marks the day that Connor's Medi Port was removed.
For 2 years and 3 months we were truly happy to have the Port and it was such a great help during Connor's past journey with JM. Never have we regretted getting it and so it is almost like saying goodbye to a friend that we loved having close for the past two years but are also happy to see go as it marks a huge progress in Connor's fight against JM :)

Connor and I started out at 4 am this morning and arrived at The Children's Hospital in Denver at around 6:20 am. Including Check-in we were setup in a room within 15 minutes. Surgery was scheduled for 8:45 am but it turned out to be delayed by 2 hours as there was an emergency surgery due to a very sad accident to a little boys in the early am. He was pinned underneath a van and had his leg crushed.
Connor being the trouper he is kept telling the Surgeon and the Nurses that he was fine waiting as long as the little boy was okay. This gave him a lot of plus points with the Medical Staff who kept telling me what a polite and caring little boy I have :)
This time around Connor chose Banana flavor for his mask and I was happy to be able to go back with him again into the Surgery room until he was asleep. The whole Medical team was truly wonderful again and as much as it squeezes my heart each time he goes into surgery there is a comfort to see your child fall asleep under Anesthesia while laughing at the Doctor. They truly have a gift with Children.

There was also something that I loved about the Waiting Room. A big screen TV/Monitor told each waiting Family member the status of your child before, during and after surgery. There was one number assigned per child and the screen would be color coded and tell you either Pre-op, in surgery or Post-op. Very comforting to me :)

One thing that made me also happy for Connor was three gifts he received today. He received a Dr. Seuss Bird he named 'Spinach', a beautiful Quilt from the Volunteer Station and something to from the Surgeon to remember this part of the journey from. He had asked the Surgeon if he could get his Port returned to him but due to Hospital regulations they usually don't. Well Connor was so well liked that they made an exemption and gave him a small part back which they were able to sterilize. Connor was thrilled when he woke up and I was so grateful to see him have a big smile.
So THANK YOU!!!

We got back home around 4 pm, 12 hours later and he is doing well. I am tired enough to go to sleep now and might be tempted to go to bed early as Andrea, Birgit and i are attempting the Incline tomorrow :)

So Thank You to everyone that joined us today through txt messages, e-mail and FB. We loved reading the messages and all the support they gave us!











Hugs,

R A C A

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