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

Monday, July 26, 2010

Calm Days :)

We had a very quiet weekend and loved the 'one' day that Ron was Home between his trips. He is flying just about non-stop the end of this month and we look forward to a quieter month in August ... at least we hope it will be! Of course we are also booking up with visitors for the month of August which will be a fun time. One week with friends from Texas and three weeks with my sister and her husband from Germany :)

Today I took on a project that I had figured was far in the distance but 'Thanks' to Connor's great progress I went upstairs to our Loft Office/Schoolroom and got it back into order for the 2010/2011 school year. I had not used that room in over seven months and it had gotten the look of a storage place. The reason of course that had me transfer the boys school items to down stairs was due to Connor not being able to walk stairs. Well, he now is back to going up and down our three levels so why not be optimistic and hope this will hold on :)

We also said goodbye to Hexe/Lexi again who we babysat for 10 days while her new Parents went on a vacation to California. It was fun having her back but it was also a challenge since it is easier to coordinate Tasha and Apple when we are gone all day for Therapy and Doctor Appointments then it was with her. Of course it is a huge comfort that she lives just down the road and that we get to see her frequently :) So if I have not said it in a long time: THANK YOU Shelly, Clare and Alexander for taking her in and falling in love with her!!!

So and tomorrow we are once again booked all day with Therapy (Speech) in the morning and a Doctors Appointment (Neurologist) in the afternoon. As it is a decent drive for us to C-Springs we will stay in town for the day and I just have to come up with a plan as what to do for the five hours in between. I really need to get better at scheduling things - HaHa

Oh, there are some news from this last weekend. If you have not been to our place then you most likely don't know that we are bordered by 20 acres of National Forest. We have a little road that leads from one end of our property to the other but is on National Forest land for most of it. Well, there is a cabin that someone on the other side is renting and they must have followed the road and went on our property a while back, and this the guy told my husband when they met, that he could not get close to our house because Apple and Tasha would not let him. He said the dogs were so intimidating barking and growling that he retreated. This is a good thing because Ron told me that after he met this guy he did not have a good feeling about him. Those neighbors sport is also skeet shooting or something like this so they were at it all weekend and since this is close to us I am not all that happy.

Ron will be back on Wednesday and we are so glad that we will have him home for two days before he will be gone for almost a week again.

Wishing all of you a good week.

Hugs,

R A C A

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