Our Journey thru JDM and Life!: Ready for Departure :)

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)-

Thursday, October 14, 2010

Ready for Departure :)

It is Thursday afternoon and the boys and I are as ready as we can be for our Departure to Denver tomorrow :) There is a lot of excitement in our house today and I hope the boys will catch some sleep before we truly get on the ship on Sunday :)

Tomorrow we will head to Denver for the night and then leave on a morning flight on Saturday towards Orlando. Now this will be a very new experience for the Smith Family in a way that we have traveled on pretty much every major airline there is but have never set foot on Southwest before. Make A Wish booked us on Southwest and we will be heading from Denver to New Orleans (which would be wonderful if the layover was long enough to catch some yummy food :) but we only have one hour and a half before continuing on to Orlando. We will arrive in Orlando around 6 PM and then check into a Hotel for the night before taking the Disney Shuttle on Sunday Morning to the Port. If all goes well we are hoping to be on board of the Ship by 1 PM :)

Now Ron will have a bit of a different intinery because he is leaving for Lima, Peru tonight and will come back to Miami on Saturday and then fly up to Orlando to meet us. So he has to wait a bit to get the whole Southwest experiment :)

Today Connor got his Methrotrexate Shot and the timing will be for us to be home next week for him to get his next shot on Friday. This will just be one day late and I checked with Dr. Soep who said it will not be an issue. Today's shot was just a tad more challenging because we can finally see the effects of cutting back on the Solumedrol Infusions and Connor loosing some weight. Especially around his tummy and this was the cushion we loved for his Chemo Shot ... well, it still went fine and no issues so hopefully we can keep using his tummy.

If you are one of my many FB friends then you know I am going to take a break from posting for a while. I truly love FB and the fact that it lets me know what is happening on a daily basis to those of you that are like family but the more friends I added the busier it got and it is just taking to much time away right now. I will come back at some point but most likely change my settings quiet a bit :)

Wishing all of you a great weekend ahead and a good coming week. I am sure we will be offline during the cruise ....

Oh, and if you are curious I did post an Album from our Miami trip here on the blog.

Hugs,

R A C A