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

Tuesday, September 14, 2010

Traveling, Ginger Ale, Crew, Passenger and loosing sleep :)















Not to sure how many days it has been since my last blog entry since I am unable to check right now online but I know a lot has happened and I am not to surprised that it has taken this long for me to find time to sit and down and catch up ...


I will do this in segments because there is so much to tell that I will do separate blog entries and the first is a bit off the JDM subject and will focus mostly on traveling :)


Right now it is 4 AM Mountain Time and we are about 1 hour and some minutes away from landing in Dallas / Fort Worth. Ron is flying to Anchorage all month and this was the time to go with him since the flights were ‘green’ both ways.


This trip we just did to Alaska was a lot of fun and very very busy. It was so wonderful to see the boys watch Ron at work, which of course is nothing new to them but it has been a while since we went on a trip since Connor got sick almost a year ago. We got some precious pictures done in the cockpit and the boys had huge smiles when Ron did his PA’s during both flights telling passengers that his family was on board and even mentioning the boys by name.

We were also spoiled by having a most wonderful crew who took care of us in so many ways. Now Connor and Alexander have enjoyed the attention of Flight Attendants since they were babies by being treated with all the goodies that can come in the form of food from First Class. I still have pictures of them munching away on Haagendaz Hot Fudge IceCream at age 2 :) On this flight we were treated to Hot and Fresh Baked Chocolate Chip Cookies thanks to Steve who was working First Class and made a trip to the back to bring us one each. This flight right now left Anchorage at 8:25 PM at night and it lands here in DFW at 5:30 AM, so after about 1 1/2 hours in the air the boys fell asleep. I took a nap after the movie was over and when I checked on them they both had little pillows under their heads that one of the Flight Attendants had placed there. I know not everyone gets this experience but it shows me how people in this job still care no matter what the politics have done to their work atmosphere.

As a Mom I was of course very proud when I was told by almost all the passengers around us how polite our boys were. Connor made friends with two Gentlemen who sat in his row in front of Alexander and I and I could hear them chatting away for quiet a while until Connor went to sleep :)


Now there is an interesting thought just for myself but at no time in our life's on the ground do I or my boys ever crave Ginger Ale but it is all we want to drink once we are in the air. If you know me then you also know that the boys have no contact with soft drinks in our day to day life's but we threw all this thought process out the door when we step on a plane. Ginger Ale it is and I am not sure exactly why :)


In my next thought process I do not want to pick on fellow travelers ‘but’ I am still stumped as to what people are thinking when they enter a plane.

When we boarded our last flight home this morning from DFW to COS we were listed to board for Group 1 and the only people that boarded ahead of us were First Class and Priority Boarding. We were assigned row 7 AB and 8 AB and to our surprise there was a couple sitting in 8 A&B. When we showed up they laughed and said they were just ‘warming up’ our seats and then the whole row 8 (AB DEF) got up and moved to the back of the airplane. Now this was all fine but they had already filled up all the overhead space for rows 7 and 8 and when they moved they did not take their bags with them. Now who does this? You do NOT sit down on just any seat but look at your boarding pass and go to the row you were given and then please take your bags to store where you sit! Airline etiquette is strange at times.


Since this blog entry is all about traveling I have some big news as well as it looks we will be on the move for the rest of the year.

We got a call from ‘Make a Wish’ yesterday and we are confirmed and booked to leave for Connor’s Disney Cruise October 14 to 21 :) :) :) The actual cruise is from the 16th to 21st but we have to leave home a couple of days prior to head towards Orlando :) This truly is a dream come true for the boys and us as a family and I am not sure how we will ever be able to express our gratitude enough other then bringing awareness to Make a Wish!

Then the next big news is Ron’s TDY transfer to fly out of Miami all of October! This is the first time we will experiment this and we are very excited to be living in Miami, FL for parts of next month.

So and then I got a call from Dr. Rider today and it looks like we will be traveling for D.C. around November 15 so the boys can enter the Twin Study Research and we will finish up the year with our planned trip to Germany again in december to see family and of course visit some Christkindel Markets again.


Just thinking of all that lays ahead I know I have to get myself very organized so we are always ahead with Connor’s Medicine Supply and Therapy plus Doctor Visits.


It will be a quiet a ride but I am very excited about it all since after all traveling is in my blood and I am feeling that we are back in the game when it comes to our life prior to JDM. Yes it will be all much more challenging and not as easy as it used to be but I am all ready to proof that JDM will not have control over us anymore the way it did for most of this year!


Hugs,


R A C A

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