Our Journey thru JDM and Life!: Thoughts and Compassion needed ....

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)-

Thursday, October 7, 2010

Thoughts and Compassion needed ....

I am truly on my way to bed but wanted to write a note about something my wonderful friends have been dealing with and that still seems to be so misunderstood by many.

Our friends Heidi and David have two beautiful twin boys named Dylan and Ryan who are 6 years old and just three months older then Connor and Alexander. In the eyes of those of us who love them they are of course absolutely perfect in every way even thought they are both Autistic.

So many of us truly take simple things we do with our children for granted and how I wish for all of you to catch a climbs of a day in my friends life to see what their 'normal' is like.

Today my heart broke a bit when I knew that this morning Heidi was attempting to take Dylan on an airplane from DFW to LAX to surprise her Mom and have a nice little vacation there. I was anxious to hear about how it would play out since neither of the boys has been on an airplane since they were babies and it seemed at first all went well when Dylan got through security and then walked around the airport happily. I can only rely a bit of what happened but Dylan had an extreme reaction when boarding the plane and it came to the point were my friend told the Flight Attendant that they will need to get off the plane.

Now how often have you taken your kids on a plane and your only worry was if they might fuss a bit or cry? Can you imagine buying a ticket and then having to abort your trip?

How often have you taken your children to the movies without a second thought? One more of many things my friends have never been able to do...

So tonight please think of them and remember there are no guaranties in life and if you see a child act up in public be careful before you judge and also think that this could be you and your child. Luckily today there were no issues from others and from what Heidi told me the Flight Attendant was really great and helpful.

Life can change in a heartbeat as we found out with Connor so if your child is healthy then be grateful and know that there is never a guarantee, but no matter what happens to your child it is and always will be perfect and the only issues at times come from those looking in from the outside.

We so love the whole Tossell Family and Dylan and Ryan will always be one of the best friends Connor and Alexander have. Truly our life is richer for knowing them!

Hugs,

R A C A