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, July 9, 2011

Friends!

This post has been so long over due and I apologize to the wonderful people I am mentioning below for not giving credit to you so much sooner.

I have waited for so long to write in the Blog about this that unfortunately I won't be able to go into detail as much as  usually do but I will try to give some snap shots about this year/summer and how much Friends mean to us :)

This year has been a reclaiming of our life from what we knew before JDM became a part of it. It feels at times as we were taking a time out and holding our breaths for two years and so much of our energy went to JDM, CureJM and the friends we made there which we needed so much at the time but it also turned us away from the people we love and cared so much in our previous 'life'.

This year was a new start as we had a wonderful Spring Visit with the Herndon Family that was all around fun and magical. On the end of their visit Ron surprised me with a Birthday Party that included all the people here in Colorado that mean so much to me ... The Simpson Family, The Gallup Family, The Olson Family, The Steward/Merchant Family and of course the Herndon Family from OK. It was not complete of course as there were some out of State Friends missing but it had everyone I consider Family here in Colorado present.

We had some fun with Kendra earlier this summer when she spend some time with us before starting her summer job in Manitou Springs and she is with us again today at the end of her job with Summit.

The boys and I had a magical trip to California in June and I wish I could talk about each day there but have to pick the parts that stick out the most. We had fun at the Aquarium and then had some fun excitements when stranded in a Dingy at high seas ;) Well, I guess we were just a bit outside the Marina where the Tossell Family keep their Boat (Yacht:) and the Dingy 'Simply Fun' decided to run out of Gas. Well I thought it was very funny but Connor my poor little son was closer to panic mode then David, Heidi and I who were with him. We ended up being rescued by another Dingy who towed us back into the Marina so all was well and we got a beautiful view of the Pelicans as well :) On this trip we also had a 12 hour day at Disney Land which was magical all around. We had 4, seven year olds, walking all day and going one some very scary rides that they just loved. We saw the Fire Works and Light Show and all this in 12 hours of walking with NO meltdown from any of our boys. True Troopers! Our trip ended with a precious and fun dinner out. This whole trip was possible due to the Tossell Families and the Bertelson Family ... THANK YOU!

With Ron home for the summer due to his surgery and recovery we are also out and about seeing some of the local festivals and celebrate Holidays that we usually miss each year due to him working almost each Holiday.

For the first time since living here we got to enjoy the Donkey Derby Days in Cripple Creek with Shelly, Clare and Alexander. So much FUN because we had such great company.

We had a most wonderful time with the Simpson Family who not only rescued the 4 Wheeler that I got stuck but then also invited us over for dinner at their home :) What a fun and relaxing evening this was! and it continued a few days later when Allison was brave enough to take me along for the Manitou Incline Hike. I am so happy that she took me along even if it meant getting up at 3:45 am ;) the high that came from this climb was worth the pain I am in now ;) I am on day two after the climb but as crazy as I am I so look forward to our next outing :)

We then had a most lovely visit from Kathleen and Charlie, Addie and Ren's Grandma and Grandpa. Connor and Alexander just inhaled all the attention and I loved the conversations and the smiles! We explored Canyon City and the Royal Gorge and I am very grateful they took time out for us on their vacation :)

Yesterday we had a fun afternoon and night with the Gallup and Simpson Family when we had a BBQ that included yummy foods and drinks. I think I am still on cloud nine from the delicious desert and the smooth and tasty Port Wine (and that is just a fraction of the food and drinks we got to sample). There was lots of play time for our 6 kids as well. Three sets of twins who have been friends now for 4 years! As always we are so blessed to not just have wonderful friends for our boys BUT also amazing friendships for us 'Grown-ups'. I am still in awe that all through my life I have been lucky to have the kind of friends that you can always depend on to have your back, are supportive but most importantly are honest and caring.

I know I might miss some people here as my memory is a bit of a blur in all the fun we had this Spring and Summer. The true pleasure for me of course is having Ron home. I know it sounds silly to be glad about an injury and I am not happy about the pain he is going through but the beauty of having my husband home is a true treasure.



The second part of why I am writing this blog is JDM related! I want to tell all our fellow JDM Friends and Families that I learned it is really important for your soul and your sanity to reclaim part of your life you had before this horrid disease entered your home. Trust me that I know all to well how much it helps to be connected with those who speak your 'new' language and who get the frustrations, disappointments and anger that can come along with JDM. It is also wonderful to celebrate the success our kids have when they make progress and moving towards a possible remission and the pride we feel by being a part of CureJM. I never mean to discredit this but I am learning that for my mental health we need to be a part of what made us tick prior to JDM.
You want to know the biggest surprise of all for me? So many like to talk about the parts when Family or Friends don't understand us but I am learning they understand everything very well. Look at your friends and you will see challenges they are all dealing with as well. It might not be JDM but they have Cancer, Diabetes, MS, Arthritis, Hip Replacements etc etc themselves or in their Family. The names of the challenges are different but not the battles. Give your friends and family a chance and you might be happily surprised :)














Hugs,

R A C A

P.S. of course we also had amazing visits from Family all year but since this Blog is about our extraordinary friends I will talk about Family another time ;)

No comments:

Post a Comment