Our Journey thru JDM and Life!: Methrotrexate, the Boys and things to be grateful for :)

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)-

Saturday, November 19, 2011

Methrotrexate, the Boys and things to be grateful for :)

In our JDM news I am very happy to report that we are now on week two of Connor's switch to the oral Chemo treatments and it seems to be a success. No side effects that we can tell and he is a trouper when it comes to swallowing 8 pills at once. Compared to the 0.8 ml injection of the Methrotrexate, he thinks it's the best gift ever and I believe him as it is a huge relief for me to not having to inject him every week!

Connor and Alexander are doing very well at Theater Class as well and have memorized all their lines already. They were so proud when the teacher told them how happy she was with them and I admit I knew they would do well as I think they are born entertainers. The challenge during Theater Class has been the fact that not only do they want to act but they also want to direct the play and constantly offer their advice on how it should play out, once again a lot of credit to them having patient teachers ;)

Right now the boys are in German School which they love and I just finished my errands of shipping two packages and shopping for Thanksgiving and also for our Goodbye Dinner for Clare and Alexander. Their house sold and they are heading to Lake Tahoe on the 23rd to join Shelly. We are sad to see them go but also very happy that their new adventure is all falling into place. I mentioned it in an earlier post that I thought their house would sell fast and it did :)

Today I am grateful for places like Starbucks and McD's who offer free wifi for the downtimes I have once I finish my errands on Saturdays. Great business sense if you ask me :) I admit I am fascinated lately with the facts why some businesses still make money even if the economy is down. My believe is you do well as long as you offer either a superb product or if you offer exceptional Customer Service. Perfection is when you offer both as in my all times beloved Apple Products. So should you need gift ideas head to an Apple Store and you can be guaranteed to make someone happy in a consumer thinking world - haha.

Oh, and most importantly we also received wonderful news this week as in the results that Connor and Alexander's friend does NOT have a brain tumor! Now they are still looking for a diagnosis but we are thrilled that this one was ruled out!

Happy Thansgiving week!

R A C A