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)-

Hope

Hope

Wednesday, August 11, 2010

Family, Friends and Therapy














I truly wanted to post last night but I was so tired that just the thought to type on the computer seemed to much of a task :)

We had a pretty good day yesterday but also a very busy one. We started out leaving our home at 6:45 AM so the three of us, Connor, Alexander and I could arrive at the Therapy Center by 8:15 AM. Connor's first session was OT for 45 minutes with Miss Amanda followed at 9 AM by Speech with Miss Kristin. Amanda told me that Connor did very well and that his upper body strength was making great progress. He even climbed the rock wall they have set up and he took joy in falling off it into the foam bed beneath it. Speech went fairly good as well in regards to Connor making some progress in sounding out the 'sh' sound and then attempting the 'ch' sound, which is still a struggle. We are not ready for homework just yet according to Miss Kristin but we are getting closer :)
Alexander and I kept busy in the waiting room and I was able to talk to the scheduler and as off next week they will add PT to the lineup following right after Speech. So we are looking at 45 minutes each session which will add to 2 hours and 15 minutes continuous therapy each Tuesday. The waiting room is fairly small and can get noisy at times but I think I am still going to attempt to get some school time in for Alexander while we have to wait. The issue is not having continuous 2 hours and 15 minutes to work with. After each session you go and sit with the Therapist and talk to them for 5 minutes on how it all went and what progress was made or not. So we have to stay in the waiting room. I am confident we will make it work so it is not lost time for Alexander :)

We finished up at 9 AM and after talking to Heidi we all decided to meet at the Cheyenne Mountain Zoo for some downtime for our four dumplings. It was pretty hot and for a Tuesday very crowded. I did not realize that a lot of families might take advantage of the last few days of summer vacation. We still spend about 3 to 4 hours there before heading home.

By then our day showed how exhausted the three of us were. Connor and Alexander argued and fought about anything and everything non-stop. I was tired so not in a good position to work well with them and all three of us were very glad to fall into bed last night.

There was one more 'JDM' highlight (hear my sarcasm please) of having to stop by Walgreen's again and picking up refills, as we do just about every week, and once again having to pay over $200 for the medications. I might have stopped putting a price tag on this disease when it comes to posting on this blog but please trust me that the money we spend has not slowed down and doesn't seem to for who knows how long.
So while I am sad at times at how much Ron is gone now I am grateful that my husband has a job and is able to make the effort to keep us afloat.

Today is our last day with the Tossell Family who will be leaving bright and early tomorrow morning. It has been so wonderful and fun to have them here and I just don't understand why they don't see how great Colorado is and why they don't just move here???? :):):):) okay, I should not complain because as of now they are our most consistent visitors here. The beauty is that that they are friends but feel like family and of course we will miss them....

I am now off to bake some Cup Cakes from my new Baking Cook Book that Heidi brought me and then we get to sample them this afternoon for Coffee and Cake when Ron gets home!

Now it is time to THANK YOU once again for all your Votes for CureJM. We moved to the 4th place!!!! Just two more spots to go and we can be the winner for the $250,000.00 Grant that will go towards Research to find a Cure! So keep Voting and keep sharing the link to Vote on Facebook or your e-mail.

Wishing all of you a great Day.

Hugs,

R A C A

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