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

Wednesday, October 27, 2010

Papa, Dad, Daddy.....


It is interesting but not surprising that we women and mom's are the ones that are more vocal and outspoken when it comes to talking about life and our kids. You look on FB and you see mostly women chatting away and 'yes' there are men posting to but not quiet as much or as frequent as we girls do, with a few exceptions of some of my friends husbands - haha

Now there is one group of friends on FB that is very busy posting everyday and this is the JM MOMS group I am glad to be a part off. We are posting questions, frustrations, our fears and hopes, Therapy Up-Dates and last but not our kids Infusion Schedules. We Mom's in this group know how important support is and we know that the reason we can spend so much focus on our kids is due to having husbands that have our backs at all times or family members that live close by and help out.
I get a lot of credit or remarks on postings I do on the blog and FB about what a seemingly good job I do in taking care of Connor and Alexander and I need to move the spot light to my wonderful and most supportive husband. I am able to stay home, home-school and take Connor to all his therapies, doctor and hospital visits because I have a husband that works hard, works even over-time so that the boys and I get the care we need financially but also emotionally because who do you think I really vent against when I get frustrated and fearful about our future? Yes, my lovely husband gets it all. So THANK YOU Ron for being there for us from the get go and never faltering. Life has thrown us a curve ball and if it wasn't for JDM you should be retired right now instead of working harder and harder. I love you and if anything JDM has shown us how strong and resilient we really are!

So all of you might not see my husband post much on Facebook and you might not hear much from him but please know he is the foundation of our family and we are doing this all as a team. I think we are all pulling our weight in fighting this battle and so are the boys who by now know what they need to do to make this family run as smoothly as is possible.
I truly appreciate all the kind and sweet words of support you post but please remember this is not just the boys and I but also Ron's doing. You just hear me all the time because I am the one that reaches out with my words.

Thank you all so much for being there for us!
We might be the Fortress but you are the pillars we lean on. We are the core but family and friends keep us stable!

Love,

R A C A

2 comments:

  1. God Bless the Dad's who are a part of a child's life and support their child's mother!!!

    ReplyDelete
  2. We love you guys! You can tell just from reading this blog and fb that Ron is an amazing dad and husband (and granddad).

    ReplyDelete