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, February 26, 2012

A busy but productive week :)

We had a really good week here with Connor feeling back to his own self again and us getting into the end sprint of First Grade :) 
Today the boys are already discussing how to celebrate their move into Second Grade which is only a few days away :)
I for once are again reminded how grateful we are to be able to Home school through all of this! Grateful to Mrs. Struble and her Cottage School which Connor and Alexander love. To Gateway Elementary for opening their school for this program! 
The boys are loving the Little Lincoln Online Program and I am happy to have a wonderful caring teacher, Elizabeth Callen, behind me who somewhere here in the USA looks over my boys Schoolwork online and grades them. I especially loved it when one day the boys had to take a test and they argued with me on how it should be done and how they wanted to do the work as a team. I finally thought I let them learn a lesson and said they should go ahead and do it their way and we scan it in and send it to Ms Callen and see how she grades it. Well, I was grateful to see her response that they had to each redo the whole assignment again. They both did and learned that they need to listen to the Instructions and me or pay the price and have more work in the end :)
We also rearranged the whole Classroom at home. We found that our dumplings are helping each other a lot and we needed a more independent setup for them. Where Connor shines more and more in his reading ability, Alexander flows through the Math and Science assignments. Funny then to see how they help each other in letting their brother copy school papers. Not the way I want them to learn obviously, so now they are sitting away from each other divided by a divider that can be removed when Team work is required :)


On Thursday I flew to DFW to meet with my Sister In-Law, Sam, who was passing through from Seattle heading to Richmond. She had a four hour sit-time and it was fun to sit and talk and catch up! Sam will be staying in Richmond to watch over her daughter, Tammy, who is undergoing Back Surgery on Monday. On my way to the airport I had the joy to drive through almost 5 inches of un-plowed Mountain Roads as there was a freak snowfall between midnight and 6 am and no one seemed to have been prepared for this. I was so grateful once again to have a car that did extremely well in those conditions and it was sad to see so many cars off in ditches and stuck on the side of the road! The flight to DFW was interesting as we had a great Flight Crew of Flight Attendants that were in the Mardi Gras Party Mode covered in beads and I was seated smack in the middle of the TCU Horn Frogs Basketball Team. So not a very quiet flight but fun and entertaining :) On my flight back I got to talk about AA Politics with a fellow AA Employee which is always interesting as well.


Then this past Friday also marked the boys second to last Snow Boarding Lesson. This was week seven and we have only one more session left. I have not been taking many pictures this time but plenty of Videos and they really have come a long way from their first attempt on January 6th. On our way home we were treated to seeing a herd of Buffalo graze right next to the road on HWY 24. We sat in our car watching them for about 10 minutes and it was such a beautiful ending to our day!


On another subject, in June 2009 I decided to be put on the Bone Marrow Donor list and contacted 'BeTheMatch.org', who send me a package with Instructions on how to be placed on the Donor list.
Now I have always been on the Organ Donor list since I turned 22. I figure my body is just a gift for the time I am on this Earth and I see no reason why someone should not benefit of the parts that are working should I die. I won't be needing my Eyes, Lungs, Heart, Kidneys, Liver etc etc when I am gone and it's not as if we have any use of those parts once we pass away. However, I am not sure why it took me so long to figure out that you can give something else but blood while you are alive. I must have read or watched a show about Bone Marrow Donations and how few there really are. If given it can easily save anther persons life (most commonly for Leukemia Patients). So I went on this list in June 2009 and other then some informational e-mails did not hear anything from them again.
You all know that by December of 2009 Connor became sick with JDM and I mostly forgot about the Donor Program. I was reminded here and there due to our stay on the Oncology Ward and I was thrilled to find out that Connor's first Roommate Henry, who has Leukemia, received a Bone Marrow Transplant from a man in Germany.
So this past Wednesday I received a letter from Be The Match that I appear to be a possible marrow match for a patient considering a transplant. It read that I should contact them as soon as possible to go over my medical history again and any changes and also for them to explain the two possible procedures to me.
All I can say is that after talking to them I am thrilled to be possibly helping someone. It seems there are only half as many donors as there are patients on the waiting list so please, please, please consider becoming one as well. There is no guarantee you will ever need to Donate, and there is still a chance they won't need me this time around as the Patient is in the early stages and it will be up to them and their Doctor to decide on the final treatment method.
The way I see it it won't cost me anything but time and a slight bit of discomfort, no comparison at all that this might save someones life ....


On another good note Elizabeth is doing much better and had her first day with out continuous Oxygen yesterday!!!


Thanks to us Home Schooling we are having school today on a Sunday so we can take advantage of living in CO tomorrow and maybe get some Skiing and Snowboarding in on a Monday when the ski lifts will be without lines and hardly any traffic on the runs :)







Hugs,


R A C A









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