Our Journey thru JDM and Life!: Therapy Evaluation & First Methrotrexate Injection done by Mom :)

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)-

Thursday, June 24, 2010

Therapy Evaluation & First Methrotrexate Injection done by Mom :)

Today was Connor's first PT Evaluation at Memorial and so far so good. Connor was very anxious and I told him to do the best he can and oh he was trying so hard ... he did very well for about the first 45 minutes but then got very tired after having to walk a lot and even go up and down a big set of stairs twice. He was suppose to balance on one leg and was unable to, but if you know were he was just a couple of month ago you would have been as proud as I was :) He even did 6 sit-ups and it was a beautiful sight :)

After we finished we were told we would receive a phone call with a schedule for him. When we finished I asked Connor where he would love to go and have lunch and he picked to my surprise Poppey Chicken. It was a treat to have some one on one time with Connor today and I was happy that the same was happening for Alexander who got some precious one on one time with Ron at home. They actually went shopping and had lunch at Burger King. So overall the whole family Smith was doing a good job today at supporting Fast Food Chains :)

Today was also the day for Connor's Methrotrexate Injection and even thought he had one already two weeks ago this was the first one for Mommy and I have to say I am very proud of me as well. Ron and I talked it over with Connor about where he would like the shot and if he prefers today or tomorrow. He was aiming for tomorrow but then we told him if he waits then he will anticipate it all night and this way if we do it now it will be done with. So brave little boy that he is we put the EMLA Cream on and after one hour I put the shot in his tummy while Ron asked him what Cowboy movie he would like to watch and surprise, surprise he still watched me BUT IT DID NOT HURT AT ALL! :) I am not sure who was more relieved, Connor or me, or who is the end was more nervous ... yes, me!:)! A good thing that Connor has such confidence in us. I am just glad it is over and now that this went so well we will keep using his tummy :)

So and now all of my three men are sitting down watching a John Wayne Cowboy and Indian Movie. Life is quiet and peaceful once again and I love it.

.... ALSO before I end my blog I want to say 'THANK YOU' to all our beautiful friends who took me at a complete surprise when so many of you stepped up to offer watching our boys after I asked for recommendations of an Hourly Daycare Center in Colorado Springs so Ron and I could have a Movie/Dinner/Date Night ... I should know better then being surprised because how many times have I learned now that even thought we do not have 'Family' living close by we do have a Family in all of you! You are and have been more then friends to us and I hope you know how much we love and appreciate all of you.

Hugs,

R A C A