Our Journey thru JDM and Life!: IVIG # 8 at TCH September 2, 2010

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, September 2, 2010

IVIG # 8 at TCH September 2, 2010

Today was #8 in our count for IVIG's and all went fairly well.

We arrived at TCH at 8:20 AM and by 8:35 AM Connor's Port was already accessed and his blood was drawn. This was followed by his Solumedrol Infusion and IVIG, finishing up with the Methrotrexate. I think we left around 3 PM but I do know we arrived home by 5:30 PM.

Our stay at TCH today was as nice as a stay on the Infusion floor can go. We got to spend time with the wonderful Stenzel Family who spoiled us today by Kent making a lunch run to three different places. There was Chipotle, Panda Express and the Noodle Bowl on the Menu. I know I was impressed because I would not have seen me going to get lunch at more then one place - haha

We also were lucky to have Amy as our Nurse today. She must be one of the kindest and definitely funniest Nurses we know :)

We passed the time by watching movies, doing art and crafts with Ms Pat and getting four worksheets done for school. Not to bad really when you are a kid hooked up to an IV Pole.

Dr. Soep was as always wonderful as well and she said that Connor's blood work looked good and the only concern we discussed was his depressive moods lately. We are not sure if it could be related to our cutting back on the Steroids or if he might not get enough sleep at night. So we decided to get him back on a nightly sleep aid for 5 days to see if we see a change. Of course if it is Steroid related then we should see an improvement as well since he just got a big dose today....

I have some wonderful news as well in regards to Connor's Firstgiving Fundraising Page. The same night CureJM won the $250,000.00 Grant for Research Connor reached his goal to collect $500.00 for research 'Thanks' to a person we never met but who added the last $75 to his account. So as of today CureJm will be $250,500.00 richer for Research - haha

Ron is on his way to Anchorage again as I am typing this and it always is an upset when he leaves. It is strange because I am used to this live now for 15 years and the boys have known our Airline Lifestyle since we had them but it never gets easier seeing Ron leave. The good part about the Alaska trips of course is him being able to see Niki, Harlow, Celeste and Sammy and with any luck the boys and I will join Ron on one trip this month.

Beate and Rainer are almost done with their tour and should be back here in Lake George by Sunday. They are not having the best of luck with the weather and she told me today that they went over a pass and the temperature was 26'F and snowing! Now I love Fall but i am NOT ready for snow yet! Of course we also posted 34'F this morning when we left the house at 5:45 AM.

Wishing you a good night!

Hugs,

R A C A