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

Sunday, May 30, 2010

Mini Vacation with Friends in TX :)


I mentioned to you on my last blog that Ron would be gone for 7 to 8 days and that we were working on a little surprise for the boys....

Well, we decided it might be a wonderful treat for the boys to bring them to Texas for two days so they can see Ron in between trips and school and the boys would also be able to have a play-date with their original first twin friends, Addie, Ren, Dylan and Ryan.

Now I knew school was going to be out but I did forget about Memorial Weekend a bit. The flights of course were all yellow or red which is not the best scenario when flying Non-Rev i.e. Standby. I still thought we had a decent chance however since we got this wonderful Atomic Clock that has never let us down when it comes to making the list exactly 4 hours before departure. So of course I was ready to get on my computer at 3:30 AM sharp when to my shock and horror I found our Internet service completely down. Trust me when I tell you as an Airline Family that fly’s Standby a lot this is not how you like to start your day :)

I got the boys up as fast as possible and we were in the car and heading for C-Springs at 4:23 AM. We made it to the airport and on the list just in time to see the 6 AM flight leave the gate. Now the next flight was at 7:30 AM and we talked to Dave, who is a most wonderful Gate Agent for AA here at COS and he said it did not look to good for us. For one we were number 14 to 16 on the Standby list and he said if we do make the flight we most likely would not sit together. Now this part did not upset me at all since my boys are true Airline Troopers and handle the not sitting together part very well .... there was however one scenario left that I had not considered at all.......

The Boarding process started and Dave came to me and said he does have three seats for us, two First Class Seats and one Coach Seat. Now I believe I should go down for some kind of great Mommy Award and if not that, at least for the bravest Mommy Award for the Day because without a thought I handed the boys the two First Class Seats, 5E and 5F, while I headed two rows back to coach at 7D (THANK YOU Dave for this setup!) I was so nervous once we all sat down and the one part that made me feel a bit at ease was me being able to see Alexander who was sitting in the aisle seat. I can promise you the boys were smiling the whole flight and the only times I was on edge was when they loudly counted down for the take-off when we started out on the runway '10, 9,8, 7, 6, 5, 4, 3, 2, 1 ....LIFT OFF' !!!!! I am sure you can guess who taught them this but never in a loud voice like this!!! and then twice I was just in time catching Alexander before he could push the F/A button! Well, he told me he was aiming for the light button but it did not look like it from my view point :) My F/A friends will know that I did well in stopping him because to me that button get’s pushed in an emergency ONLY and not so my son can have help getting his tray table out - yeichssss.

Never less. we are almost ready to land now in DFW and so far so good. The First Class Flight Attendant was an Angel and served my boys in plastic cups not glass and filled them only 1/2 full with a straw in them. Bless her. So I know many of you have your own Airline Stories to tell and i am not talking as a AA Family here BUT the AA Employees today made the day for us.... they treated us wonderful in every way ....


Now we will be off for a day of fun at the pool and a movie in the afternoon!....


Okay ... we are now in the Hotel after a most precious and magical day with our friends, David, Heidi, Dylan, Ryan, Sonya, Addie & Ren. We all met when all of our twins were still small and we all connected right away. Those two families were the one and only reason our move from TX to CO was such a heartbreak for Connor and Alexander, not to mention me. The magic of today was the fact that even thought we are not in each others daily life our kids went right back to playing together so wonderful and before we knew it we had one of the longest play-dates in a very long time. Connor did amazing and you could not tell he has been as sick as he was. I am tempted to believe it was the part of our play-date focusing for a couple of ours of pool time. Connor loves the water and he moved so easily and so he was on the same level as all the other kids. I am sure he felt like an equal and this has not happened it about 6 months. I want to Thank Aaron & Sonya's family for opening their home to 6 kids and 4 Adults and have them taking over their backyard! and also a huge THANK YOU to David, Heidi's husband who braved a trip to Subway to pick up 10 Sandwiches and a list of 10 different kinds ... I know I would not have been tempted to do this!


We finished our afternoon with a movie at Sonya and Aaron's home and some more playtime. Connor came up to me after a couple of hours and said he wanted to go to the Hotel because he was tired. So we got a ride from the Tossell Family to our Home away from Home and we are now relaxing and truly slowing down.


Now we are just waiting for Ron to arrive from Las Vegas and our day will be happily complete :)


Thinking of all our Vet's this Memorial Weekend!


Hugs,


R A C A

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