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

Wednesday, June 16, 2010

For my sister :)

This post is for my lovely and beautiful sister Beate :)

We talked on the phone yesterday and she told me that I am not keeping up on my blog anymore to which I replied that for one I had more down time in the Hospital BUT most importantly there is not as much happening anymore and I figured our day to day life was not exactly that interesting :)

So now I will write today and see if I can get back into the swing of things :)

Ron left again this morning for work but it will be a combination of work and play since his trip is taking him to Anchorage to see Niki & Harlow :) Anchorage is actually considered International due to the distance they fly over the water. I am sure some of the lower 49 States might make a joke out of this and truly do consider it another country ... or was that Florida, Texas & Arizona??? JUST KIDDING :) Which does remind me I was so so so tempted this morning to write my 5 cents about what I think of Arizona and the Anchor Babies Idea on facebook but then decided I am pushing enough buttons and to keep my mouth shut this time around :)
The Boys and I wish we could have gone as well to Anchorage and there even was room for us but Connor is suppose to have his infusions tomorrow. I am now saying 'suppose' because when we came home this afternoon we had his package of medication waiting for us but the part with his Needles, gloves, tape and other item's needed for the infusion was missing. I do have his Solumedrol and Methrotrexate waiting in the refrigerator but hope that the rest will arrive in the morning. I talked to the Medical Company and they will overnight it. Shipment PLEASE make it because I would love to have a day 'off' on Friday so the boys and I could go to the Farmers Market.

As for today I was going to take the boys for a surprise outing to a Splash Water Park. I looked up the Address online but there were no hours listed. Well, we arrived at 10:45 AM to find out it does not open until 1 PM. So we switched course and instead headed to the movies to see 'The Karate Kid'. I send a txt to Miss Jennie to see if she was up for a short notice trip to the Movies with her two precious boys and she amazed me by making it with a 1 hour warning :) So 'Hat's Off' Jennie for being as spontaneous as me :)
The kids all loved the movie and I thought it was good but it was much more violent then the original I remember from the 80's. To watch 11 and 12 year olds beat each other up like this was pretty scary to watch for this Mom :)

After the movie I made another attempt at the Water Park since my boys were wearing Star Wars Swim Shorts all day :) but when we arrived the second time around it was only to find out it was filled to capacity and now closed to new comers. Can you guess that my two dumplings were a bit disappointed? So I promised them one more movie at home for a movie night with popcorn and to my luck they picked one of my favorites again 'Blind Side'

Now they are in bed and I am heading that way as well. I think my husband left me a gift in the form of a sore throat and headache ... :) the good news about this is that now I can't yell that loudly at our boys or dogs. Yes, our puppies have been pushing my buttons as well lately by getting up each morning between 4 AM and 5 AM and then barking nonstop at some unseen enemy in our forest behind the house. Not to mention I found them with another deer leg with hoof attached and some furry thing like a squirrel in Apples mouth. Way to yucky for this City transplant :(

Goodness, for someone who thought she had not much to say I think I did my job well :) Hope my sister is happy with me :)

Hugs,

R A C A

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