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

Saturday, April 7, 2012

Happy 8th Birthday and our Texas adventures :)

I admit I should have been writing sooner and there sure has been a lot happening in our life but for some wicked reason I did not get the energy together to post any sooner ;) maybe it is my new happy pills that keep me to content to write - haha

First of all my babies have turned 8 years old this week! Eight!!! so hard to wrap my mind around!
Yes I get nostalgic at times about how I miss them being babies and toddlers but then I feel so much pride looking at the amazing, handsome and smart boys they have become. So many times each and every day I realize how already they have all these little streaks of independence. As I said in my FB post the day of their Birthday, I believe in all my heart that this world is lucky to have them in it!

Now I am going to back track on our Texas trip. Ron was scheduled for training at the Academy for a week and since it coincided with the boys Spring Break we decided to come along. We opted to take Ron's car on a road trip so we would have transportation and only battle Airplane waiting lists on one end of this trip. The plan was to all drive to Texas together in a two day trip, leaving on Monday. Then the boys and I would fly home on Sunday morning to be ready for the start of school again Monday.
So off we took and the drive to Texas went very well with a stop for the night in Amarillo. I got spoiled that night with a dinner at the Cracker Barrel and from then on it was a crazy week of eating for me :)
Once we got to DFW we stayed at the Park Inn in Irving and the activities started. On Tuesday afternoon after arriving we all unloaded and got back in the car to see some of our old playgrounds as in our old Neighborhood and Neighbors and then off to Southlake Townsquare for some Dinner at the Rockfish and Ice Cream at Picodellos :)
The following day Ron started his classes in the afternoon so right after breakfast the boys and I spend some time in the Hotel Pool. Later we headed out for some exploring and found an ALDI store and I was in shopping heaven :) We had lunch at Central Market with some play time for the boys, we walked around the Grapevine Mills Mall and finished up with a trip to In N Out Burger in Irving.
On Thursday the boys and I headed back to ALDI to put together a care bag for the Tossell Family who we sadly did not get to see that week due to all four first being sick with Strep and then the Flue! Scary and I can't imagine having all of four of us this sick at once! Afterwards we went to Founders Plaza to sit and watch the Planes land and take off. What a fun place! I found it through 'yelp' and you can't get more entertainment for free as far as I know :) We went back to the Hotel and played some more at the pool :)
That was also the day I started to not feel well. My body felt completely out of sinc and all I could figure was the abuse I was causing my tummy with all the different food intakes and also not getting the air quality I am so used to. We literally went from cold air-conditioning out into warm weather constantly. I call it breathing in canned air and I know my lungs and body missed our clear cool air in Colorado.
So this all translated in the boys and I taking the day off on Friday. We spend time by the pool and for lunch we picked something up and drove back to Founders Plaza were we sat at the Park benches watching Planes again. Then we headed to the C.R. Smith Museum at the Academy while waiting for Ron to finish school. Once Ron got out we all drove to the Henderson Families Home and had a fun relaxing Coffee and Cake break here. It was amazing to see how much Andrew has grown but so wonderful to also still see the little boy in him who ended up playing to so well with Connor and Alexander. Of course it would have been funny to see my face when it was time to go and we found all three boys playing the xbox game 'Call of Duty'. Of course I should have known my boys would love it ....
Oh and I do have to mention even with my feeling out of sorts physical wise I still could not resist eating 1 1/2 Krispy Creme warm Donuts.
So with Friday behind us we hit the road running on what we thought was our last day in Texas. We met Kathleen, Charlie, Jessica, precious Baby Hadley and Holly and her girls for Breakfast at Central Market. Pure heaven spending time with people we love and adore! and of course getting some cuddle time with beautiful Hadley. Connor and Alexander were mesmerized by her and of course this date also involved lots of yummy foods ;-O
From there we went across the street to Southlake Townsquare to meet my long lost sister Pam, her daughter Kimmy, who is beautiful pregnant, and her husband Andy. This was another visit that brought back so many memories and the pure joy to reconnect. It was also heartbreaking to have some time to catch up on Pam's battles with Parkinson's. One more cause that I will do my best to educate myself about so I can be of help in the future. So here this beautiful get together included food as well and we ended up at the Rockfish and finished with Ice Cream and Picodellos again. By now I was on day two of feeling completely out of sorts and while I would at home have just curled in a ball and rest I was glad to have all this distraction by seeing 'family'. I truly do look on everyone we saw on this trip as Family and not just friends. They have all been with us for so long and so many years and through all our ups and downs. So while I do not miss Texas to much (other then eating myself crazy and going into a shopping nirvana ;) what I miss more then anything are the people. All of you bring so much happiness to us so THANK YOU for planning all the get together's and taking the time for us. Some like Andy and Kimmy even took on quiet a drive to see us.

Then came Sunday morning and our journey home. Ron drove the three of us to the airport and 'yes' all our Airline Buddies already know what it means trying to fly on Spring Break. Oversold, overbooked flights and us hoping for a miracle. Well, we like being at airports and that is a good thing! We tried our best, had lunch, watched TV and napped at the Non Rev Lounge and people watched. Our spirits were great but no matter what we did we did not get on a plane. Ron finally talked me into coming back to the Hotel so up we went and thanks to Ron got a ride back to the Hotel. This all payed off well as the boys ended up in the pool again and I got to talk Pam into coming over to visit more and then join us for Dinner :)
After this experienced we decided to not fly at all but join Ron again on the drive home. I was worried at missing two days of school but caught a break when Colorado got a bit of snow and the schools closed and called for a Snow Day :)

If you watched the news about the storms and Tornadoes in TX you also know we just made it out in the nick of time. We actually saw the storms build up on our drive north and I said it looks like Tornadoes were building as the sky was all yellow. We ended up spending the night in Childress and then ended up driving through snow once we reached New Mexico. We also found out we drove for 80 miles on a closed road due to the storm but did not realize it since we were following a Semi Truck that was ahead of us and going around the blockage.

So we got home late Tuesday night and then celebrated the boys Birthday on Wednesday. They were not happy to learn that before we could party they had school that included the BEAR Testing, but hey, that's life and normal people have to work on their birthdays, too :)

Hope you all had a great week and I am glad the Tossell Family is feeling better! It was strange to be just a few miles from them all week and not being able to see them!

Hugs,














R A C A

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