Our Journey thru JDM and Life!: Gearing up for the Holidays ❤️

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)-

Wednesday, November 20, 2013

Gearing up for the Holidays ❤️

It's ironic that my first entry in a while comes while sitting in the waiting room at The Children's Hospital. We got very lucky in regards to both, Connor and Alexander, receiving PT back to back each Wednesday. It makes for two hours in a waiting room for me but it also means just driving down the Mountain once each week :)

We also made a change in tne Boys Cottage School Program and they are now going one day a week from 7:45 am to 3 pm instead of twice a week from 11 am to 3 pm. The boys love it and so far I think the setup is wonderful...

Well, especially for me as it is almost shocking how much I get done in 7 hours by myself!!! A dream for any homeschool parent - lol

We are also extremely busy preparing for the Holliday Season :) I will be getting my Mom in about two weeks and we are more then excited and happy about this! The boys will be playing the Grinch in the School Christmas Play and while they are excited about this as well they are also very nervous now realizing how many lines they have to learn... One thing our boys do not lack is ambition and confidence - lol

One huge part about our daily life right now however if the newest Fundraiser for CureJM and our part has been selling paintings to raise money. We had several paintings ready to sell that the boys had made throughout the year but we were thrilled and surprised to see how much interest there was and now we are all painting to keep up the demand. Even I picked up the paintbrush and love drawing little Stick Figure paintings with writings on them. Connor has picked up on this and has done amazing work in this as well! Alexander makes great action paintings and I am so proud of their creativity and joy in expressing themselfs.

If you like to see some of the Artwork we have made then please visit Artsonia and look at the Gallery 'Painting for a Cure'

http://www.artsonia.com/museum/gallery.asp?exhibit=720601

We also have an FB Event where you can purchase paintings available for sale and you would directly donate the cost to CureJM, it is public and listed under 'Paintings for a Cure'

https://www.facebook.com/events/1427942177423977/?ref=ts&fref=ts

The link to donate to the boys cause is

http://www.crowdrise.com/curejm-holidaychallenge/fundraiser/ankesmith. So if you find a Painting that has not sold yet on the Event Page then please write your interest under neath the Painting and MSG me your mailing address.

Now there are several other CureJM kids and families offering wonderful art products and sales and with the Holliday Season around the corner it be such a great way to buy a gift and in return give hope for a Cure by giving money for a Research! Have I mentioned yet that a few weeks ago CureJM was awarded the Gold Star for being one of the most outstanding Charities! Run by volunteers/Familes who want nothing more in life then a Cure!

So I will end with a couple of more links for you to please look at and see if they are offering something that catches your heart ❤️

Paracord for a Cure

https://www.facebook.com/events/549423788473099/?ref=ts&fref=ts

And Mary, Martha & Myositis

http://www.livingwithjuvenilearthritis.com/2013/11/mary-martha-myositis/

I wishing all of you a wonderful Holiday Season and that the joy will trump the stress that often comes with it. We are very much looking forward to the next two months but it will also be a challenge how to deal with the Hollidays as well as it will be our first without my Dad and of course it will be the 4th year anniversary of Connors battle with JDM. It all started in the end of November in 2009 and while time has taken some of that fear away I still feel a coldness creep into me when we get closer towards Christmas. 2009 and Christmas will always be tne one that I thought we loose Connor.