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

Thursday, April 8, 2010

Day 20 ... back to TCH but only for the Day :)





Today I want to start my message by remembering Hope who went to Heaven one month ago .... We as a family still think of her and hardly a day goes by without Connor or Alexander mention her and asking questions to the 'whys'. It really makes me pause lots of times when I think how life for all of us goes on and what does it truly feel like if we or you were the one that lost a child? Life as we now know it would never be the same and how do you move on when a huge piece of your heart is missing? So lots of Hugs to Hope's Family today!

Today Connor and I returned to TCH for his once monthly IVIG infusion. We left the house at 6 AM and got here around 8:15 AM. First Connor had some blood work done and then after his dose of Benadryl and Tylenol he was hooked up to his Solumedrol (Steroids), followed by the IVIG and he finished with the Methrotrexate (Chemo). The whole event took about eight to nine hours and then we were looking at our 2 hour plus drive home. Connor is taking it fairly well and it helps tremendously that he has Emma and her parents here as company. We got to see Dr. Soep and his blood levels look very good. We will stay on the one pulse of Solumedrol per week for now which just sounds wonderful.
Connor also asked his nurse Amy if he could visit the seventh floor to see his former nurses and Therapists and he was to proud to show them how well he was doing and he walked the whole way from the 7th floor to the 6th floor. He has not walked this much in months. I brought the wheel chair with us just in case but he did not sit down once.

Him and Emma also got to do some painting that Amy set up for them and I got busy cutting some Birthday Cake we picked up on our way to the Hospital. Emma and Connor looked pretty funny delivering cake around the Infusion Center with a plate each on their IV Pole.

After all, our day went really well and actually the eight and a half hours we spend at TCH went by very fast Thanks so much to Emma, Dawn & Kent. How much difference it makes when you have fun company when dealing with infusions.

Connor fell asleep withing 10 minutes of leaving the Hospital and then we got a beautiful surprise from my husband, Dad, Mom and Alexander who met us in Woodland Park for a Mexican Dinner. Can I say how good the Sangria tasted? :) My Mom who hardly ever drinks had a Margarita and a Tequila and she was the funniest little tipsy person ever tonight :)
We ended the night having a small Bonfire roasting Marshmallows and the boys loved it. The first one for us this year ... I was told it was warm all day here in Lake George and Ron plus my Dad did a lot of work splitting wood while Alexander got to enjoy the trampoline and play ground again.

Thank You all for the beautiful messages Connor and I got thru FB. It was in a strange way nice to go back to TCH and see all the people that have been such Angels to Connor while he spend 31 days there.

Hugs,

R A C A


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