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

Thursday, May 10, 2012

Road Trip to LAS and our spring into Summer Break.

Goodness I once again really fell behind in posting in here!

If you are on FB of course you know we went to Las Vegas this past weekend but I will write more about it here for those of you that are not on FB.

The four of us left bright and early at 3:20 am on Friday to drive all the way through to Las Vegas, which we figured would take about 12 hours without stopping but would still give us a cushion and get us in in the afternoon with a Breakfast and Lunch stop. The drive went really well with a Breakfast stop in Grand Junction, CO, and a very yummy Lunch stop at Arshels in Beaver, UT. This place was recommended to us by some locals at the CONOCO Gas Station and what a treasure find it was. The service was exceptional as was the food :). The building itself was very small and very old but also very clean :) Since the boys know I like to check in each place we go on either Foursquare or Yelp they told me that I had to give it a five star rating which I happily did. It was also a fun fact to learn that Beaver was the Birthplace of Butch Cassidy.
The drive itself was very beautiful in scenery. We loved Utah and Arizona and it only got a bit boring once we got to Nevada but by then we were so close to our final destination that even that was not bad at all.
We decided to stay at the Westin Hotel this time around so we would use our Hotel Points for some of our stay and as always the Westin did not disappoint. Even Connor and Alexander love those Heavenly Beds and Niki who arrived the next morning (Saturday) even said she got a good night sleep while there :)
Now our trip to Las Vegas was not for pleasure only but to help Niki pack up for her move back to Alaska. We stayed VERY busy the whole time there and I am happy to say we got everything done that needed to get done. At first we thought there might be some problems getting Niki's car back from her soon to be Ex as we expected to have it handed over on Saturday morning but after a lot of back and forth he finally left it for us to pick up late Saturday night. Ron and I went to get it while Niki stayed at the Hotel to watch the boys.
Sunday started out as the busiest day of this trip as Niki had some more sorting and packing to do, also some shopping for a Guitar Case and a visit to the Vet for her Cat's Health Certificate so she could get onto the plane on Monday. Now here is where I was happy we were in Las Vegas .... where else do you find an Animal Doctors Office open all day or a place to get work done on a car?
it turned out that when we picked up Niki's car Saturday night it might have looked okay from the outside in the dark but just about everything that could be wrong on the inside was wrong. Every warning light was on. The breaks did not feel right and lets just say that the cleanness factor that I require on the inside of a car let a lot to wish for. So Ron found a Goodyear Tire place that ran a complete checkup, changed all the Filters and Fluids, put on new breaks in the back and two new tires as well. The breaks were down almost metal to metal. Now most of you know how I feel about cars, the way I felt this cute A3 Audi had been abused actually physically hurt my heart! I convinced Ron that I needed the car cleaned and Detailed before we would drive it home and luckily we found a great place close by who did all this. They shampooed  the seats and carpet and of course vacuumed and wiped everything down.
We all were super tired and exhausted at the end of the day and had dinner at the Hotel so we could get some sleep for another early departure on Monday morning. The Alarm went off at 2:30 am and we were on the road by 3:20 am again.
Now we did have time for some tourist play time on Saturday afternoon where we saw the Belagio Fountains and had a fun Dinner at the Place with an Automatic Bull. The boys were thrilled they got to sit on it and also loved having their picture taken with two beautiful Showgirls :)

Our drive home went very well and we timed it to stop and have breakfast at Arshels again in Beaver, UT. Lunch was again in Grand Junction and Dinner at our favorite place here in Lake George. I do want to mention that we left Las Vegas in temperatures that were in the high 80's'F and we came home to the 30's'F and SNOW. Niki flew back home to Anchorage on a noon flight and arrived late that night at her home.
All in all it was an exhausting trip and also emotional of course BUT it was also a wonderful trip as in us getting some very precious family time with our youngest daughter. The boys love and adore her so much and of course cried when we said our goodbyes. For me spending time with Niki is always precious as I miss her a lot and used to be so spoiled having her every summer when she was little.

Luckily Ron is having four Anchorage flights this month so I am hoping to be able to take the boys on one of them so we can also see Harlow again.

Back here at home we are getting super busy for the ending of the school year. This week we are finishing the boys Country reports and they had to each choose a country that they have a connection to. Well this was an easy one as Connor chose Russia, the country he was born in, and Alexander chose Germany, the country where his Mom's Family is from and which he has visited eight times in his eight years on this earth :)
Yesterday we cleaned out their desks at school and we are faced with just three days of school left next week which include a Field trip, the final year Class party with all the kids Country Reports and the May Fest for the whole school as a finish.

So you see there is never any boredom in our life and all the worry I had that JDM would limit or change our gypsy lifestyle was for nothing as we are back in full swing and all was needed was some more organization skills when it comes to Connors Medications but that turned out to come very easy after all :)












Hugs,

R A C A

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