Our Journey thru JDM and Life!: Day 16 at CMH

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)-

Friday, February 12, 2010

Day 16 at CMH

Today was a big LAB day for Connor and he got his blood drawn at 7 AM and did not fuzz at all. This is why Ron has the night shift with him because I do not like to be there when this happens. Today they had to do a bigger withdrawal due to checking all his levels again to get ready for our departure!!!

It looks like our launching Date is still set for Tuesday or Wednesday :)

Today has been a crazy but also a fun day for the boys.

The part that was not so much fun was Connor falling down again today hitting his head. He has a bump on the back of it and has been a bit pale and not to happy understandably after that. We asked for some more Tylenol and it was almost a bit of a battle getting it. The nurse kept telling us he should lay down and take a nap but Connor wanted to do the exact opposite so he was not a happy camper at times.

On to the fun part.....Connor & Alexander got sweet valentine cards from Texas :) then every kid got a huge bag filled with toys from the hospital (donated by different organizations). On top of all this he got an even bigger bag filled with fun coloring books, toys for both Connor & Alexander that included their favorite Chocolate (Reese's Peanut Butter Cups) and a really funny gag gift, to keep the nurses on their toe,s from their previous room mate - Henry :)

I wish I could put into words how blessed we are in regards to all the wonderful people we have met here at CMH. There have been gifts and cards from room-mates, Research Team, Nurses, Cafeteria Workers, Environmental Employees.... But most importantly the part we take home is the knowledge how much kindness is out there and how many people really care and love the job they are doing.

Not much has changed as of today. We had the normal doctor rounds and they are now trying to work out the details for his flight back to CO.

Another one of our big changes is the fact that Ron got him a Playstation 2 moved into the room and now all 4 boys are playing constantly either on the PS3 or the PS2. Alexander is to the point that he crawls into Connor's roommates, Grant's bed now to play with him... talk about bonding - ha ha

I really need to take a picture of our room now. We have pictures, cards and Balloons everywhere. Grant got a ton of balloon's delivered two days in a row so he gave some to Connor to go with the 4 he had and now the room is covered in it :)

It has been such a busy day so I am sure I am forgetting something....