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

Tuesday, September 18, 2012

Landshark and going strong!

We as a Family are super proud of our youngest who had his first Landshark race yesterday and did amazing in it.

The best part of Alexander running the 1 mile race was the look on his face on how proud he was of himself and the huge smile he had when the race was finished. I did not get the exact time but he was around the 10 min mark.
There were, I believe, 5 Elementary Schools 'competing' against each other and it was neat to see so many friends that have kids at other schools and to visit with them. Pippi and I even took use of some Picnic Blankets to sit and relax while the kids all warmed up for their races. I do have to insert here however that it was C O L D. Sunny but very very chilly!!!!
Alexander was super worried I would miss taking Pictures or take a Video, which made me laugh, as anyone that knows me knows this is something that would never happen. Hey, I am the Mom that averages about 300 pictures a months, with plenty of practice before on Niki who can attest to this as well :)
So I have pictures and Video to proof what a little Rock Star my baby boy was and is!

Connor, who has been doing really well those last few days had a strange reaction to the whole race. In the morning he was very busy making a sign to cheer on Alexander and he was by his side all through the preparations for the race. Once the kids took off he started crying and sobbing none stop. That lasted for a good 20 minutes or longer. He cried because he said he was missing his brother (who was running the 1 mile loop) and that he was worried he would get hurt. It came so unexpected and no matter how much I told him his brother would be back any minute (10) he kept on crying.
On the upside off all this, my two boys who love to argue and fight with each other, were hugging and telling each other how much they loved each other all night long after this. 

We had a little celebration dinner and between this time to the time we got home Alexander lost his Ribbon. That was a whole new heart break and I so hope we can get a replacement Ribbon!!!

Today we had school at home, plus Cottage School, which entailed Picture Day. Connor dressed up in a Sweater and Alexander chose to wear the CureJM Shirt in honor of Connor. Very sweet.
Even thought the day went well and Connor had a Playmate from 5th Grade during Recess, plus a nice Conversation with Mr. Davis, he still felt tired most of the time and begged me to not have him come back to school. I did tell him we took a commitment and we will discuss this come Spring and the new sign ups. This I did because Alexander loves Cottage School and in no way or form do I want to take this away from him right now. I would be hard to drive back and forth to justify Connor and I think he has to learn that some things we have to do even if we don't love them. Plus, most importantly, I know the Gateway Community is a safe place for him and I am in the classroom during all their schooling.

Tomorrow will be Health Screening at the school so we see how this plays out.

If you are on FB then you know it is hard for me to stay out of the Political Agenda but then it is hard to be quiet at something that impacts you directly. AA is still a huge worry as is Healthcare and Connor's future living with a Disease that has no Cure and gives him a preexisting Condition for the rest of his life. That alone can keep me up at night knowing my Baby will grow up with this and at one point will have to face this by himself.
















Hugs,

R A C A

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