Our Journey thru JDM and Life!: Day 47 / 27 at TCH .... A pass to freedom :)

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)-

Monday, March 15, 2010

Day 47 / 27 at TCH .... A pass to freedom :)

What a wonderful day today for all of us but especially for me on my Birthday.

It started out with a slow morning but an interesting night for Alexander. He had one strange dream after the other waking me up about four times. Crying during one dream and then laughing during the next ...

We left the house a bit before noon to head for Denver and after a couple of stops we made it there about 15 min before 3 PM when Connor was allowed to leave the Hospital for 4 hours of freedom!

Connor was so excited when we got there, just like Alexander and neither could wait to see each other again. We even brought Trixie with us since Connor had asked about her since my parents arrived.

I have to say I thought four hours would be a long time for us all to spend together but my was it short. We went to the Northfield Outdoor Shopping Center which for my Texas friends might compare just slightly to Southlake Town Square. We had some Coffee and Hot Chocolate and some pastries for our Coffee and Cake Time and then walked around in the fresh air. We also did some shopping at Old Navy. I have to tell you I always loved the GAP, New York Company and Old Navy BUT when it comes to comfort clothing that you like to wear in the hospital Old Navy does the trick. Great T-Shirts and Cargo Pants - haha

We also stopped quick at Target so we could restore some of Connors supply of Mini Raviolis which is right now his newest food obsession. So and then we realized we only had one and a half hours left for dinner so we ended up at the Red Lobster since no Cheesecake Factory was around and we do love sea food :). Both boys loved touching a life lobster and then decided on each eating Crab Legs. Not sure how this counts as a kids meal when it was us parents having to work on getting food on their plates :) I have to admit all this time in the hospital I was so excited for a sit down meal and 'yes' having an alcoholic beverage. Since I knew I did not have to drive tonight I was sure I was going to have a glass of wine, or Sangria and then when it came down to it what I craved as the good German I am was a cold beer ... may I say it tasted great? :)

However, I am writing about secondary things here because the part that was absolutely heavenly was having my family on one table, talking, laughing, kids arguing and just the normal feel for one hour and thirty minutes was out of this world. Will I ever take 'everyday life' as granted again?

So tonight a Huge 'Thank You' to the Therapists and Doctors of The Children's Hospital in Aurora, Colorado. You truly made my day and you gave a gift to my family that was absolutely priceless!

I wish I could go into detail about all the touching notes, messages and gifts I received today from Family, Friends and even one of Connor's Therapist - I am calling out to you Miss Terrie Carrie :). You all just know how to make me feel loved. I have to admit some of my wonderful friends also know how to shop for the perfect comfort food as in Chocolate ... can I bring my wii fit to the hospital or how fast can I jog with a wheel chair in front of me - ha ha

Also, I do want to Thank several of you for the great response to my blog yesterday. I really do appreciate reading each of them and it actually feels comforting in a strange way that I have hit a mark for some of you but I also feel like I might have given some insight to how it feels when you walk a certain path. Never will I be able to compare our worries or pain to someone else. So everything I write is from my heart and are my feelings and opinions only :)

Remember, we all face battles at one point or another. Don't ever feel your pain to be less or more important. As a matter of fact, when we stayed on the 4th floor at CMH there was never a competition to who suffers more but it was completely understood that we are all in pain and trying our best to deal with it and work through it. As a matter in point it is when people try to compare pain that it becomes an issue, for no one can walk in someone else's shoes. You may sympathis but truly never completely comprehend what it is like...

So love to all of you!

Hugs,

R A C A