Our Journey thru JDM and Life!: The Day after Fathers Day and Blood Draw :)

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)-

Monday, June 21, 2010

The Day after Fathers Day and Blood Draw :)

All I could say is that our Fathers Day weekend was just wonderful!

... but then you know already I have way more to say then that :)

We started our weekend with traveling to the Renaissance Festival in Larkspur, CO where we met up with Matt, Jennie, David and Zachy. The whole day there was just magical and truly our whole family had smiles on their faces. We started out with a ride on an Elephant followed by the boys getting their first try at Archery. Gosh how focused they were when they finally got to hold a Bow and Arrow :). Then we split into teams of two for some Jousting. First came Alexander and I on a wooden horse and sadly I have to admit after two tries we kept missing the ring we were suppose to get with our lance. Well, Alexander and I never heard the end of it when Ron and Connor got it on their first try! .... beginners luck is all I might say about this matter :) Connor did win a plastic knife and since he has a twin brother they gave one to Alexander as well ... there truly are times when it pays off to have a twin :)

We as a family have been to Scarborough Fair in TX many times and I have to say that the Renaissance Festival here in Larkspur was even better. If you live in CO and you have not gone yet please consider going!

Connor did fairly well throughout the day but still used his wheel-chair about 60% of the time, plus I kept him on Tylenol throughout the day.

We left right at closing time which was at 6 PM and we were the trying to attempt dinner at the new Restaurant on 24, Ruby's BBQ, only to find a line of about 40 people waiting in line to get on the waiting list .. CRAZY! so we will give it another try on a weekday :) we then all ended up at Cast Aways, which I understood to be a Pirate Themed Restaurant and then was surprised to see a German Menu. It was okay but the Jaeger Schnitzel was not that impressive :)

So and then Sunday, Fathers Day, we spend at home having a fun time with our friends again who I must say felt more like Mothers Day because the men took care of our dinner which, Thanks to Mr. Matt & Miss Jennie, entailed Chicken, several different kinds of Sausages and Ribs ... I am still trying to recover from the food I ate! The kids had a ton of fun playing outdoors all day which included at Treasure Hunt again and lots of jumping on the Trampoline. I leave what all happened on that trampoline between the Olson family and ours BUT I know I will be laughing about it for as long as I live :):):)

So and then we finished the weekend with a leisurely breakfast together before we had to face reality again ... Connor had some Blood taken today from his Nurse, Sharon, and we will now wait to see if the new pain Connor is complaining about in his legs and knee is due to some more inflammation or if it is due to him having such a long break with therapy.

Today, Tuesday, we are back in the swing of things and we started out with a Neurology Appointment with Dr. Stephen Smith who took a look at Connor's legs so he could address the concern that was mentioned in Chicago last time that there might also be something going on with his Spine or Spinal Cord. The initially diagnosis is that one leg is a bit more weaker but Dr. Smith thinks this might still be due to the JDM. We will see him again in four weeks so he can look again if there has been change.

Both boys were measured in height today at the Doctors Office and right now Connor is 3 feet and 10.5 inches, while Alexander is 3 feet and 11.5 inches. So 1 Inch separation.... and about 5 pounds in weight. My babies are officially not 'identical' in looks anymore ... :(

Wishing all of you a good week and I sending special thoughts today to Hope's Grandma who is in the Hospital right now. We hope everything goes well and that she will be home again soon!

I am also sending some Hugs to my friend Caroline, who is traveling today to be with her friend in Seattle. I mentioned her friend in my blog once before but admit I never met her. I don't think you have to know a person to send some prayers their way if they are facing a tremendous battle with cancer ...

Love,

R A C A