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

Friday, July 16, 2010

Nichole Rae Smith :)


This Blog will be all about my lovely Daughter Niki and the only thing I feel sad about is that it took so long for me to do this ....

If you followed this Blog then you know that in February, while we were in Chicago at CMH, our lovely daughter became a Mom to a beautiful baby Girl, Harlow.

Niki came in my life at the age of 12 when I met Ron and if anyone would have asked me if I was nervous of becoming a Mom to a twelve year old at the age of twenty seven I would have said 'yes, very much so'. Never would I have thought that this girl would steal my heart within days of knowing her. I felt bad for her many times because she had to humor my ability of figuring out how to parent when I was still growing up on my own in many ways. She did marvelous of course and I think we both survived the last eleven without scars for show :)
One Story that will always make me smile is the first time Ron went on a trip and I decided to take Niki Roller Blading at a Park in a neighboring town. Of course I knew my ability to get lost because this is what I do best so when we did get lost and Niki asked me where we are I replied 'No Idea but don't worry we have a full tank of gas and now we get to explore some new sights' She looked at me like I was crazy and this is when I asked myself if I did not get the 'Mommy Lesson about not getting lost with your child' :)

How could I sum up Niki in a few sentences? I know she has a huge Heart, she is very kind, non-judgemental and everyone that meets her and gets to know her can call themselves lucky. She has always been a beautiful Girl but if you just look at the outside you miss her true being for it is her inside that makes all the difference.

I am beyond lucky to call Niki my daughter and if you know me then you know how much I love showing her off. This is why I feel bad I have not put a light on her sooner on this blog. She has been a part of Connor's JDM Journey from the beginning and in many ways it has affected her harder for she is not here day by day in person to see what was and really is going on.

Now that we are all so busy voting for the Pepsi Refresh Research Grant Niki has reached out through her Facebook page and even had a friend of hers who is a DJ for the biggest alternative Rock Station in Alaska post it for their Audience on their FB Page.

There is a lot more I could type but then I have to safe some for the future :)

My biggest wish for my daughter is for her to know ALWAYS how much I love her and always will. She is the best daughter I could have dreamed of having and now I get to watch her being an amazing Mom. Let's see if she ever gets lost driving with Harlow in the car :)

Hugs,

R A C A

1 comment:

  1. What a blessing each of you are to each other. great post Anke.

    ReplyDelete