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, August 17, 2010

Therapies! 3 Total and a save by an Extended Warranty...

Oh what a Day and were do I begin? I guess at the beginning where I always do :)

Today we started out leaving our Home at 6:45 AM for our first experiment with facing three Therapy sessions in a row.

Connor started out with Amanda and OT at 8:15 AM, followed by Speech Therapy with Kristen and ending with Lynnette and PT. Connor did really well at all three Therapies according to all three Therapists and we left today with Homework in Speech for the 'sh' and ch' sounds, and we also have stretching exercises to do at home for Connor's feet and legs plus he will start wearing his boots at night time starting 'tonight'...

Alexander in the meantime had 3 hours to spend working on school work in a small waiting room that was busy and of course noisy. It was not easy at all to try and keep my one son focused who already has a harder time concentrating. So when I felt that both my boys gave the best effort they could give I figured they earned a reward.
I asked them what would be a treat for them and I promise you that my heart dropped when I heard they wanted to go to Chuck E Cheese. They have been about four times in their life's and it is not a place I love to enter. I just see Germs everywhere and have a hard time relaxing, not to mention the food offered there is not my cup of tea at all. However, I figured if I can make them go through a morning like today then I can go through one hours of Chuck E Cheese. The boys of course had fun and I survived the experiment. I am however grateful in retrospect that the previous 3 times it was Ron who took them :)

We then stopped really quick at Target to get some Milk (and 'yes' there is a reason why I mention this :) and then went on our way home. The GPS was telling me that we should enter our Garage at 2 PM and of course why do I wonder it was 4 PM when we did enter our Garage with a Loaner Car.
To get to the Loaner Car we had to end up at a red traffic light with my oil and engine signs glowing bright red and my car going dead. I was able to restart and the lights went out but by the next intersection my A/C warning sign came on and we smelled a burning smell from the front of the car. I of course expected to see flames by then but all stayed calm and the best part was that our Lexus Dealership was only 2 miles away! I turned of the A/C and drove straight to the Maintenance Entrance.
Well, the good news was that nothing was wrong with the Engine or Oil (we just had a check-up a couple of months ago) but the burning smell we had came from the A/C Compressor quiting on us. The cost to have it repaired would have been $2000.00 if we had not 'THANKS' to my husband bought an Extended Warranty earlier. So now we don't have to pay for it 'Thank Goodness' and the boys and I got to enjoy the hospitality for 2 hours at the Lexus Waiting room which connected me with a couple again I had met at my last Check-Up Appointment. I also was handed three booklets from a Lady who was a Jehovah Witness after she overheard me talking to the other couple about Connor's JDM. I think I made her happy by listening to her and taking the booklets...

You remember how I always rated the Hospitals and ER's we got to visit in regards to how well they treated us? Well, I will do the same now to Car Dealerships because I am just in love with the Lexus Dealership here in C-Springs. When I pulled up today the girl that greeted us asked right away if I want to continue on with a loaner until they figure out what was wrong. I told her I rather wait since we live an hour away and if it is nothing then I don't want to be committed to coming down the Mountain again tomorrow. She then asked me if there was anything in the car I needed while waiting and I remembered the Milk I bought. She right away opened the trunk and carried both gallons inside and stored it in their refrigerator. When we were told we could leave with the loaner car and we walked out I watched two employees putting the booster seats and Milk in it.
Not to mention the waiting room is as pleasant as a waiting room can be. There is food everywhere from sweets to healthy, Sodas, Water, Coffee and Tea. Three Computers with Internet service, a playroom for the kids and a nice lounge to watch TV or visit with other customers. No one wants to sit and wait but if you have to then this is the place I choose :)

As you know now we did get home by 4 PM and we are beyond exhausted.....

At home greeted me an e-mail from 'Make a Wish' asking about the Boys Passports and I did not even think about the fact that they could have been expired since we travel all the time but of course it is one of those days and they did expire in APRIL. The boys got them at age 1 and since they only last for 5 years when you are a child they did reach their end in April. So now I have to see how fast I can get their passports redone.....

Do you remember how I used to always try and end with a good note on my blog when we were in the Hospital? Today I can end with the amazing and wonderful news that we are in 2nd Place for the Pepsi Refresh $250,000.00 Research Grant. This is amazing because we are an all Volunteer Group of Parents and Friends at CureJM competing against 400 other causes and it is due to all of You VOTING and SHARING.
Thank You so much and please keep it up so we can stay in second place or even move to the first place by the end of the month when the Voting stops.

Hugs,

R A C A

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