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, January 29, 2014

Another 'Group' - Home Schooling

How could I possibly have forgotten another group I belong to. Homeschooling as a Family!

I think I forgot it because while so many now home school you often don't consider yourself a part of a group since we all have our own unique approaches on how and why we homeschool :)

Our journey into deciding on homeschooling was at first a free choice that four years ago turned into anecessity. First it was our life style of traveling and my need to expose the boys to as many cultures and believes as possible. Teaching them about their heritage, Russia, and then in equal parts the US and Germany/Europe was a priority to us. By the time they were approaching First Grade we were talking about putting the boys into full time school, however our hands were forced by JDM. Connor and Alexander fell behind by 6 months in their school work due to the hospitalization and medical appointments and therapies. Once we sat down with the boys wonderful Cottage School Teacher we agreed it be best to have the boys redo First Grade. We all agreed how important those early years are in getting a good foundation put into place. Hence we then decided to continue with the Virtual School program of Lincoln Interactive. This program has been a heaven send for my family. We can bring our school with us to medical appointments and other travels. It keeps Connor safe since each time we tried to expose him to a classroom or a group of people in an enclosed space he would end up in the ER. When you have a child with a compromised immune system it is extremely dangerous to expose him to a confined room full of people. We learned the hard way that schools are a fertil breeding ground for colds and flu viruses. Each could be a fatal outcome for Connor. Another big plus for us is that this school program is aligned with the public school here at home where the boys still go once a week for Enrichment Classes as long as every child in the class room is healthy.  Plus all their required State Exams are done at the school. We found a beautiful balance that works for us right now. What the future brings is out in the open but what I want to point out is it took a couple of years to see what would work, and what works for us does not work for another family. Even within the JDM community we all follow a different path because each of our kids might have JDM but react different in form of exposures. Connors body never gives us a slow warning sign when his immune system reacts. In his case it is always straight to a shut down of his muscles. He might have the word Derma in his diagnosis but it is the Myositis part that puts the fear in us.

As to the Socislization part of Home Schooling I actually want to laugh out loud when people bring this up as a worry. Here is where our boys are socialized: They have traveled extensively since age 1. They know better on how to be acceptable of different cultures and people then many Adults. Put them in any new setting and they shine and not shirk away. They have a confidence second to none. Now add the exposure to the medical world. Both of them have a comfort and ease in dealing with people in tne medical community that once again most Adults don't have. They speak for themselfs and asked pointed questions during each hospital stay, doctors visit or in Therapies. I only get great feedback from the Proffessional world of Travel and Medical on how composed, polite and well mannered the boys are. So do you blame me when the interaction to other kids is not my main priority? Oh they do interact with other kids in Cottage School, during they yearly 8 week Ski/Snow Boarding Lessons, during Track Running in the Spring and Fall and then the weekly Chess Club. I know for a fact that friendships I formed in my early years had and have no impact on my life now. They do have wonderful friends their own age but not many. Which is great in my world as quality always trumps quantity. Are there still parts in social settings we can improve? Absolutely. We all can ;) 

However here is the true reason why I want to laugh out loud about the concern in Socialization. NOT because I think our boys are perfect in that regard... No no not at all. They are boys who push their boundaries and they made acquaintances with the Principles Office on several occasions. Once for playing in the boys bathroom with the hand soap and coloring on the mirrors. Once for being openly disrespectful to our beloved Mrs. Struble by ignoring her lessons and not answering her questions and then stepping on a classmates legs on the way out of the classroom. Once for opening the container that holds the Fire Extinguisher. According to my youngest he bumped in it by accident and it opened up but I am a parent who had no issue when this incident turned into a missed recess and time in the Principles Office.  I know they can be scatter brained and they are curious to no end, talk nonstop and they test how far they can push. My question is who has boys that don't? Maybe that perfect child exists somewhere but I can tell that I have yet to meet it. Being a parent and volunteering in school before (not this year) I met many children and while I love and adore many I would call none of them perfect. None of us is. 

So I would never say Homeschooling is better then Public School or Private School. They all deliver in their own ways as long as it matches your need ❤️

Hugs,

R A C A

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