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, December 31, 2011

Happy New Year!

Happy New Year dear Friends!






2011 had a lot of up's and down for us as a Family and there were some frustrating parts, some sad and heartbreaking times BUT also many happy events as well ... so I guess it was a true picture of what Life is all about.


Our biggest celebration for 2011 is by far the progress Connor made on his journey towards remission. On the outside you would not know the battles he had fought in the last two years and last year at this time and date he was in pain with both his legs in casts and also still showing the signs on JDM. We still had to travel with a wheel chair and he was still busy with Therapy sessions weekly. 
This year he was weaned of his Therapy by the month of June, he was able to join Cottage School again even with some hiccups of exposures to his immune system. The biggest success is the tapering of the Prednisone to just 0.5 ml a day and the ending of his IVIG Infusions in the fall of 2011. He still has his daily Cyclosporin and his weekly Chemo but even there was the huge improvement to be able to go from Shots to Pills! HUGE for Connor who knew he needed them but always hated the injections!


We travled to Chicago three times this past year, in January, April and September. In January we stayed at a Hotel close to CMH and had fun exploring the surroundings even in the cold and with a Wheelchair. In April we stayed at the Airport BUT we got to see the Miller Family and also Candy! In September we stayed once again with the Miller Family as we had in 2010 many times and of course being with Friends always makes a Hospital Trip more pleasurable and fun!


All in all we were also back to traveling again even thought we sadly were not able to travel to Germany this year. We did however take a huge road trip to Oregon to see our precious friends Brenda and Eric! Brenda turned 40 this year, just as I did and her husband had set up a beautiful getaway on the Oregon Coast. 
The boys and I were also spoiled by heading to California this past June to stay with the wonderful Tossell Family! What great adventure we had there as well!
Ron, the boys an I also had a couple of wonderful Road trips around Colorado that included Steamboat Springs, Pagosa Springs, Durango, Silverton & Ouray.
We got to enjoy a Rockies game and weekend in Denver and of course the recent Bronco's Bear game for Ron and Alexander.


The parts we love about each year are having visitors. We love having a full house and being able to spend time with Family and Friends and this past year was not disappointing at all.
Thank You to the Herndon Family who spend Spring Break with us, the always reliable Tossell Family, Kendra, Kathleen & Charlie, Niki and Harlow and of course the best part ... 3 visits this year from Oma & Opa!!!


The sad and heartbreaking parts that came into our lives were of course the passings from so many we cared about:
Monte in January,
Sandy in February,
the 2 year anniversary of Hope's passing,
and then October our brother in-law Ron lost his fight against cancer.
All four deaths were due to cancer, which is not a statistic I like at all ....
Sad was also the move from our friends Shelly and Clare to Lake Tahoe but the bright side on this one is that we now have friends to visit in another beautiful part of this country :)


I also had the joy to be a part of two Baby Showers, one here in CO and one in TX. Both babies are doing well and are absolutely gorgeous!


We added another family member as in Bella and we love, love, love her! Everyone in my opinion should have a cat as I never had a clue how much fun they are :)


Ron of course battled another Shoulder surgery and has been home since June.
We are also still in a bit of a shock that AA filed for Bankrupcy but once again that is life and not something we were able to control.


So you see I am not sure how to grade 2011. There were some real highs with Connor and some real lows with the loss of loved once lost.


I am ready to face 2012!


Thank You, Thank You to all of you who have shown nothing but love and support!


Happy New Year!
Ein Frohes Neues Jahr!


Prost,


R A C A

1 comment:

  1. Wishing you all a very Happy, Healthy New Year!! May 2012 bring you joy, love and prosperity! Prayers for a Cure in 2012 also!!!
    Love and Hugs,
    Susan and Dominic

    ReplyDelete