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

Sunday, February 27, 2011

Remembering Rev. Sanford (Sandy) Morgan

Today was Sandy's Celebration of Life Service and it truly was a wonderful Service remembering and honoring a most wonderful man.

In no way or form do I want to even attempt to make justice to the wonderful words that were spoken today from six different Pastors to honor Sandy. What struck me the most is that the Sandy/Mr. Morgan, the boys and I came to love in the last four years was the same person everyone else was talking about. Here was a man that lived his whole life to honor God, and not just like some Pastors who are excellent in preaching, he lived by his believes and therefor showed us what a true Christian should be all about. Now there was one other person in my life prior that showed me the same conviction and that was my Mother In-Law, Connie Smith. She was raised Catholic and was committed to the Church until the day she passed away. Both of them were always kind, patient and not judgemental in any way or form. Both were also great listeners, which is a rare gift in today's world. They had the gift of making you feel loved and they made you feel that your thoughts and ideas mattered.

The boys and I went to Church this morning at 10 am and we got home at 3 pm. Leave it up to Sandy to get us back into a Church and then for this large amount of time. For someone who has not been to Church in a long, long time, the boys and I jumped in with two feet. We reconnected and saw many familiar faces again and the whole atmosphere was warm and kind. It was great having a few minutes talking to Rev. Carlson and his beautiful wife and I can see where he might be as great a force as Sandy was :)
Connor and Alexander also made me proud in how well they did today. It was precious for me to watch them in front of the open casket saying goodbye once again to 'their' Mr. Morgan and the only challenge I really had today was getting them away from the casket so others could pay their respect. Of course they also had a million and one questions and it was fun for me to see other Adults at the Church take on the challenge to answer some of them :)
Naoma looked beautiful and I so hope that she found comfort today in being surrounded by her family and so so many friends.
It was not just the Services today that were very touching, it was also touching to see how well the whole day was setup. I know there were a lot of people that worked hard to make this happen and I want to Thank Kathleen Mezack as well for keeping me in the loop this week.

I am glad we went today and I am not sure what the exact cause is but I felt like going straight to bed when we came home. I figure my boys are not up to going to bed at 4 pm so it is a movie for them and hopefully I can talk them into going to bed early today after we had Dinner.

Ron is in Paris tonight and will be home tomorrow night. We look forward to having him HOME for three days this time.

I hope your weekend was pleasant!

Hugs,

R A C A

No comments:

Post a Comment