Our Journey thru JDM and Life!: Day 5 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)-

Monday, February 1, 2010

Day 5 at CMH

Today it looks like we might be up for an emotional roller coaster when it comes to Connor's disposition. He will be all sweet and smiles at one minute and then start crying at the next. He had some blood taken this morning and we also tried to get him to walk a bit. He cried after about 20 steps and asked to be carried. He also is up-set because he wanted a Peanut Butter and Jelly sandwich (yes those who know me well can see how I adjusted to this one - haha). Anyway, he started to cough again and the Nutritionist ordered him back to purred foods for now while he seems to tired for chewing and swallowing. Connor did not take to well to this but promised to be better about it :)

We also took Connor to have his Finger Nail pictures taken again and to see Dr. Pachman for a minute. She was with a family who had a little boy with JDM and it was nice to meet and talk to them for about 5 minutes.

It is 1:30 PM now and Alexander is on the 7th floor at the classroom doing some school work for one hour and then Miss Amanda from Child's Life will pick him up for some play time.

More later, but we get the feeling we might be here for a few more days...

So it is 6:20 PM and Connor is going to sleep for the night. He said he was tired and that was it. Ron and Alexander are on their way to pick up some food and head 'home' for the night.

Today without a doubt was a challenge on all of us. Connor definitely went from some smiles to sad and crying to throwing a little temper in one second to the next. He wanted to color and when he couldn't he got upset, if we tried to help he got upset because he wanted to do it himself... then he started crying if he colored outside the border and said it needed to be 'perfect', where he gets this from I have no idea!!!

He also had another Physical Therapist come in today to do another assessment and this did not go over very well. He said he had enough and wanted everyone to leave him alone....

Alexander had some school time today and some special attention from Miss Amanda from Child Life. We feel that some of his restlessness and acting up has to do with the fact of so much attention going towards Connor.

The Hospital also had game day today called 'Body Parts'. You can play it in the playroom or through your room watching the TV Channel. It is like BINGO and you have to match 5 Body Parts. When you win you get a toy. Well, they only allow 1 toy per family and Connor and Ron played in the room thru the TV and Alexander and I were at the Play Room. As it happened, Alexander one right away and got to pick a gift while Connor up in his room won about 5 min later......

So to put it all in one sentence... We are glad today is over and we hope tomorrow will be better!

Hugs,

R A C A