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

Sunday, June 27, 2010

Back to Work and the WorldCup....











The biggest upset for our little family yesterday was seeing Ron go back to work. He left for another 4 day trip which was suppose to include San Jose and Santa Domingo but was changed to San Jose, JFK and San Jose :( It truly is hard to see him go when we as a family are so happy together when he is home. The part I am focused on is that his retirement is within reach and we have to hold on just a bit longer.

The boys and I had a very busy day yesterday with a PlayDate scheduled at the Zoo for the Teddy Bear Days. We spend almost 5 hours there with some very precious Mommy friends of mine: Jamie, Vicki and Rena. I believe I have not seen them since Connor got sick but the beauty of it all was that it felt like we just saw each other last week. Of course it helps that we are always in touch through Facebook. Between us four Mom's there were 15 kids and the chemistry between the children was heavenly. What also made this PlayDate so special was the fact that all the interaction with the others kids made Connor walk for at least 90% of the time. He only tired towards the end of our time there and by then he had walked almost every hill that was in the Zoo!
The Teddy Bear Day's were also special because it asked for the kids to bring their favorite stuffed Animals so they could have a checkup done. Connor brought his Curious George Doctor Monkey who ended up getting a Shot and X-Rays taken and Alexander brought Boots who had a burn on his head from when he touched the Fireplace in our Home. Boots got s Shot as well and also had some blood taken and an X-Ray done. He ended up with three band-aids and some oxygen. The boys were so serious through it all and really were attentive to their Animals :)

I was not feeling well yesterday so was truly worn down after 5 hours and did not feel up for a one and a half hour drive home so I decided to take the boys to see Toy Story 3 which they of course thought was a great treat for them. It was needed for me because I was able to sit still for a couple of hours :) Never less the movie was wonderful and had some great lessons for my boys. I even had to cry in the end and my boys told me on the drive home that they learned it was important to treat their toys well and also to share them with other children when they don't want them anymore :)

..... and now I am moving you to the World Cup again. I am sorry that the USA lost to Ghana but I hope this will not discourage you to watch the rest of the World Cup. There is so much Spirit in Soccer so please consider picking a country that is still left and root for them. There are as of now: URU, GHA, NED, SVK, BRA, CHI, ARG, MEX, JPN, PAR, ESP, POR and of course if none of those due to trick then there is Germany who just beat England 4:1 this morning. Connor and Alexander were bouncing all over the living room yelling 'Germany' 'Germany' for almost 90 minutes nonstop :). I am not sure if I will ever get my dumplings to play the game BUT I am doing the best I can to get the spirit of the game ingrained in them. We missed out this year in rooting at the Olympics because we were camped out at Chicago Children's Memorial Hospital but we are making up for it now :)

Now we are trying to lay low for the rest of the day and catching our breath. Plus our highlight for today is waiting for a Skype call from Ron ....

Wishing all of you a relaxing Sunday.

Hugs,

R A C A

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