Our Journey thru JDM and Life!: Day 34 / 14 at TCH

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)-

Tuesday, March 2, 2010

Day 34 / 14 at TCH

Our two week mark at TCH! only one more week and we have a tie with CMH...

Connor had as always a busy, busy day at the Hospital. As always it starts with his Breakfast Club, followed by Speech, OT, PT and Speech again. On Fridays he also has Cognitive Therapy. This is the crazy one because according to his doctors he does not need it but has to take it to satisfy our Insurance. He seems to love the class however so doesn't mind it.

Ron sat in on both of his Speech Therapy today and said that Connor was doing really well. It seems the trick is for him to speak very slowly. He also walked all the way to PT pushing his wheel chair, practiced at PT walking with a walker and then walked back again with the help of his wheel chair. All of this is the most he walked since being in the hospital. Can you say Motivation!

He knows Oma and Opa are showing up on Friday and every-time he talks to my Mom on the phone he tells her he wants Tomato Soup with Butter Dumplings. My poor Mom will be cooking gallons of it I am sure.

I also want to mention the therapy dogs that make the rounds each day in the hospital. Connor looks forward to each visit and just loved petting the dogs. Today he had a visit from a Great Dane who weight in at 105 lbs. Last weeks Great Dane, Quattro weight in at 165 lbs, they are truly very gentle giants :)

And then as a highlight Connor and Ron got a visit from Pastor Hurshel Hendrix and his beautiful wife Leta at the Hospital today. I know Connor must have been thrilled. They miss going to Church and when we were unable to leave the house when this all happened they were most upset about 'missing' the live Christmas Nativity this year. We truly appreciate what a wonderful Church family we have, starting with Rev. Sandie and Naoma Morgan who Connor and Alexander and our whole family just love to pieces, to Pastor Marvin Carlson and precious wife Rosalie who have been a most important role in the way of getting us information that let us to finding Dr. Pachman and Connor's treatment in Chicago!, to Tim and Carol Conrad who on behave of a very compassionate congregation brought over cards and gifts for both Connor and Alexander shortly before our journey to Chicago began. So today a huge Thank you to our Community Fellowship of Christians Church here in Lake George. You and your prayers lift us and keep reminding us that God is helping us along this journey and that we are not without hope.

Alexander and I have been busy at home and I think for the second time I was really excited to come home until I realized once again that there is actual work for me to do - ha ha!

Thanks to my Husband I was also reminded I needed to get the guest bedroom ready since the next time I head home my parents will be with me. So that got me to run into town so we could clean my car, buy some salt for our walkway (yes, I am NOT a fan of salt but now that we are dealing with inches of ice it has to do and the last thing we need is for my Mom to fall again and break an arm). I also picked up my Mom's favorite Dove Chocolate but she has to do without the traditional flowers I put in her room unless I get time on Friday to pick them up :)

So and then the car wash took about 1 hour since we got stuck in line with two cars ahead and five behind and the person first in line went on strike over something. Took the gas station manager 30 min to get them through the car wash. I felt like I was in a movie ... can someone really get upset at a car wash?????

So to make a long story short ... my car was beautifully clean for about 45 min and then I entered our driveway. We had a most beautiful day here in Colorado with lots and lots of sun that melted the driveway into a muddy mess while I was gone. And the lesson for all this? Who cares about a dirty car? - ha ha

So hope all of you in CO enjoyed this gorgeous day. It sure looked postcard perfect looking at a snow caped Pikes Peak and amazing blue sky behind it.

Hugs,

R A C A

P.S. the picture was taken when Connor and Alexander played T-Ball last year in the Spring of 2009