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

Saturday, August 27, 2011

Schulhaus Denver/Colorado Springs & Tour de ?

This was an amazing and VERY busy week for the Smith Family and I have to say I loved every minute of it.

On Monday I was able to make it all the way back up the Manitou Incline in 1 hour and 8 min and I was pretty happy about this as the last two attempts the week prior I only made it to the half way point before my body was ready to quite. I had started a cleansing Diet that cut out all Gluten, Sugar, Meats other then Fish and Organic Chicken and Night Shaded Plants as in Tomatoes, Peppers, Potatoes & Egg Plant, and of course no Alcohol. I have to say it sapped me of my energy in a big way. I wish I could say I lasted for the whole four weeks I was suppose to stay on but in all honesty I lasted for about a week. The final straw came when we traveled to Denver to see a Friday Night's Rockies Game this past weekend... how can I be at a Baseball game and NOT take a bite of a Hot Dog, Nachos or Cracker Jacks? If that was not temptations enough I was then faced with one of my favorite Menus after the game in the form of a place called The Cheesecake Factory? ;) Trust me my willpower had no match at all .... so when it was time to call for a stop I figured I might go down in a big way and added to my Giradelli Chocolate Cheesecake a Long Island Ice Tea ... Figures of course that after that binge eating I was able to hike the whole Incline again. I think my body is telling me that it is made different then other humans out there and it needs sugar and Chocolate as a fuel ... I should have known ... ;) Kidding aside, I truly do admire all my friends that are able to pull this off and also look amazing, are in great shape and have endurance!!!

Tuesday was very exciting as it market the boys first time to return to Cottage School with Mrs. Struble, in almost two years!!! Connor and Alexander love their three hours, twice weekly, at Gateway and it is a most wonderful addition to hour Home school Program. They talked all about Beetles and even got to touch them, playing the drums in Music Class and getting Awards in PE that it made me smile and happy to no end. Of course they think that 'normal' school is like this five days a week and think they have it harder for being Home schooled as I try to bug them with something they do not like, as in ... Writing and Reading! How could I come up with something horrid like this? ;) well, someone has to do the dirty work so it might as well be me ;)
Thursday of course we had a full day of catching up with School at home so you can imagine how tired we all were after spending almost 6 hours in the Class Room ...
Yesterday, Friday, was actually very calm here at home and we sailed through school in less then three hours. So a lot of free out doors play time for all of us. We even had a Bike Race to the back of our Property and back to the House. I was able to go to the Incline again in the morning and choose to just go half way, not so much because of how I felt but to give my knee a break which has been causing a bit of pain lately but is expected when ones workout includes climbing stairs for one mile and then running down the trail for 3 or 4 miles. Motrin does become your friend .... I also realized with Fall approaching I need to start my Incline later as it was very, very dark when I arrived at 4:45 am and the sunset was trying to appear after I was about half way down the trail. Makes for Interesting Climbing when one can not see very well ... plus I admit by not seeing to many fellow climbers I was a bit psyched out of the through I would stumble over a bear or Mountain Lion ...

Today, Saturday, then market another very exciting day as our dumplings started their first day at the Schulhaus Denver/Colorado Springs for German School. This is of course very exciting for me as it will give the boys a look into parts of their Mom's Culture as well as Traditions and learning about Holidays as well. The best part is they will learn to read and write in German as well ... they understand German very well but the speaking part is still a challenge at times and it was so fun to see them in their class room talking in German. Now there was a part were I cringed when it was our dumplings turn to introduce themselves and Connor said that all he likes for his favorite food was 'Ueberaschungs Eier' (Surprise Chocolate Eggs) and that his only 'Hobby' was Playing Video Games ... Video Games??? THEY HAVE NOT PLAYED IN ALMOST A YEAR!!! - were was his mentioning of Bike Riding, playing out doors, LEGO, Playmobil or Coloring? ... Alexander of course followed suit and also mentioned just Video Games and did throw in that he loves Harry Potter but when asked if he liked Reading he said a loud and definite 'NO'. I can only imagine what they thought of Ron and my parenting style :)
All of this is hugely possible Thanks to my husband who has been very supportive since I first approached this thought of them going to Saturday School. Ron must have taken over 100 pictures today and he was in the Class Room with the boys for the whole three hours while I got to sneak away to shop at the German Store and also chit chat with other Parents at the school. The boys loved having him stay with them and you should have seen their beaming faces when on the drive home Ron told them how proud he was of them and their manners and behavior in Class.

Tomorrow we have promised ourselves a well deserved day off and I voted to have some reading time, nap time and watching movies to which my three men said they will just vote to watch movies all day ;) Either way it will be heavenly :)

Wishing all of you a great Sunday and special Hugs from us to the Hill Family who Welcomed Baby Hadley on Aug 25 to their Family. She is absolutely beautiful and I am grateful to Facebook for being able to anticipate her arrival thanks to all the updates by Sonya and Heidi :)













Hugs,

R A C A

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