Our Journey thru JDM and Life!: Our love for long Weekends!

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, February 22, 2012

Our love for long Weekends!

I was so grateful to have this long four day weekend because we needed all four days to get Connor through his cold. Yesterday was our first day of him being fever free and no coughing or runny nose. Alexander was only impacted with a low grade fever for about two days but Connor was hit hard with some very crippling headaches and just feeling plain miserable.

Now I do not get as worried anymore about the boys exposure as I used to since Connor has been tapering his Steroids, but I am still aware that he lost a lot of his Immune System boost after we discontinued the IVIG Infusions. This was a proven point when there is an exposure Connors body is not equipped as his brother or Ron and I to fight it off. None of us was hit as hard as Connor, and it hurts me to watch him suffer when the rest of us around him are not. We stuck to a very religious schedule of four hour intervals of pain and fever medications and my special German Cough-syrup and I am so glad it helped without us having to involve a trip to the doctor.

Now a huge part of why I am writing this post is due to little Elizabeth and her family. They had by far a much worse weekend then us and her lungs have been under tremendous stress. Elizabeth has been on continuos oxygen and Breathing Treatments. Her parents have the whole setup at home so have been able to avoid going to the Hospital, however this does not mean it has been or is an easy battle. They have been up almost every night and can you imagine the worry and pure exhaustion this causes when your child has a hard time breathing? I remember this from Connors early days in January 2010 when I would hold him in my arms each night listening to him breath and praying he would keep breathing! The first night I was able to sleep agin was when we arrived in Chicago and he was admitted.

So keep Elizabeth and the Bailey Family in your thoughts and prayers!

The boys and I miss them today at school and we so hope to have her smiling face back in the classroom next week.

As to us we are back in school today and we took a little Field Trip yesterday to Golden, CO, to visit Buffalo Bills Grave and Museum. The boys loved it and I was glad we got to get out of the house again.