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, January 9, 2012

Tooth Fairy - Finally ....

Okay, this might be only in my mind since there is no scientific proof BUT today I think we won another battle agains JM!

Our poor little dumpling Connor never had the experience of what it feels like to natural loose a tooth in his 7 years on Earth.
At age 2 he had to have one tooth pulled out when he chipped it on the tile floor and the nerve was exposed. This was a very dramatic event for him. We then entered JM and with it he got to see his brother's teeth become wiggly and fall out but never his. In Connor's case his permanent teeth actually started to come out behind his upper and lower baby teeth. So once again to the Dentist with the event of Connor getting four teeth pulled out last year. This time it all went much more smooth as Connor likes this Dentist and was not in a screaming fit like at age 2. Very composed in fact and it paid off with a visit to a 60's Dinner to have Milkshakes and Ice Cream afterwards. Plus he craved Elvis Fries and I am still not sure how he was able to eat them after his ordeal of having four teeth pulled but he did it! Trooper as always :)
So two weeks ago Connor came running to me telling me that two of his teeth are wiggly! He looked at me and said, Mommy, we are beating JM and I am getting better because now my teeth finally are coming out on their own. Today was the day! He lost one while playing downstairs, a tiny one but never less a tooth! Huge for us!

Today we all watched Video's we took of the boys in 2005 and this brought back so so many bitter sweet memories. The Video's we looked at today were from June 2005 and the boys were just 14 months old. We had Christina stay with us for the Summer and she must have been 10 or 11 years old then! We saw her friend Mika, Marks daughter and also Marks Mom feed the boys Yogurts. There was sweet and precious Andrew as well and lots of video of the boys in our backyard pool. There was Len and Pam as well ... how I wish I could have bottled up some of this time and how truly innocent we all seemed.
Even seeing myself when Ron was filming and wondering where this person went? I have to say I liked myself then as well but most of all I loved looking at the screen and thinking how truly precious life was for us then. This was before we even knew about Alexander's tethered Spinal Cord! 6 years and a combined 6 surgeries later, 10 Anesthesia's between the two of them. Just think, all we knew back then was wonderful family and friends, a house full of fun and laughter with the most beautiful and funny 14 month old dumplings. Oh, innocents of it all.

The truth is, when we put the boys to bed tonight I thought that my love for them has not stayed the same (and trust me I could not phantom a bigger love then) but never less seems to grow more and more each day.
How can one know them insight and out and not see what a gift they truly are. Both Connor and Alexander are sweet, funny, caring, smart and such fighters and survivors. I love how they have a natural confidence in everything they do or attempt to do and how they are such amazing extroverts. They have never seen a stranger and have a curiosity of life that is unmatched.
I feel bad for those that don't see this because they are truly missing out.



The picture above is of course Ron but also Christina and Galina in the summer of 2005.

Good Night sweet friends,

R A C A

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