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, July 20, 2010

Therapy and looking back on this weekend...





Today we had to leave the house at 7 AM to make Connor's OT Appointment at Memorial at 8:15 AM.
Therapy went really well and Amanda, Connor's Therapist, told me that they had a cancellation and if we are ready Connor could start the Hippo Therapy this Thursday at 2 PM. The only thing that could cause a hick-up is the fact that the Release Form that Dr. Soep told me she had faxed is missing. We now are both trying to get a hold of Dr. Soep and see if she could fax it again. Connor of course is very excited to start so I hope all falls into place ....
What I was really looking forward to today was Connor's Speech Evaluation. As you know he had a huge laps in Therapy when it comes to speech due to the horrible experience we had with the In Home Care Therapist. I tried to mince my words back then but the more I think back about her three visits to our house the more I get upset. This woman should not work with Children and even now I still see Connor cry from the insults she handed out. I am so grateful to my husband for making the call to the In-Home-Care Provider to let them know that we did not want her to see Connor anymore. Of course that put us also in a bad spot because there was no Alternative and we had to wait to be released as an Outpatient and then wait to get an Appointment for an Evaluation. Well, all I can say today is the I love Kristen, the Girl that did the Evaluation. She was just like the girls at Denver's Children's, fun and considerate. Connor tried very hard and was very cooperative and he told me after the fact that he will like working with her ... Thanks again!!!

Taking a step back now I have to tell you that the Musical on Sunday was a huge success. Connor and Alexander did wonderfully and since Connor was part of the Drama Team he got to sing and participate in 5 Songs and he danced so beautiful. He also did well with his role of 'James Brown the Water Boy :) I taped about 30 minutes worth and I was one very proud Mom :)
The boys got to stay up late that night but not late enough to await the arrival of Ron's 'little Brother' Len, his beautiful Wife Angela and one of their daughters, Kendra. Len and Ron started out together about 24 Years ago with American Airlines and have been best friends ever since. We had a wonderful Monday with just relaxing and visiting. Kendra and I took the boys out 4 Wheeling and when I got tired, Kendra kept going taking both boys all over our property. I got some great girl time with Angela and the Men finished up the grilling some yummy gourmet hamburgers and Brats.
Unfortunately this morning it was back to work for all of us. The boys and I left first to head for therapy, followed by Ron who left for a four day trip today and closing up the house was the Root Family who is driving back to Texas today.

Before I finish I need for all of you to send some prayers, positive vibes and thoughts to a family who lost a daughter, a wife and mother of two. The woman who passed away is a friend of a friend of mine and she was only 36 years old and they are guessing it happened so fast due to a Blood Clot. Very Shocking and very sad.....
I know I am asking for to much but how much I would give to just understand once again the 'whys'. I know quiet a few of you keep trying to tell me or explain to me the 'why' but for those left behind I can not see how any words or explanations can cause comfort ...

Thanks again for Listening.

Love,

R A C A

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