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

Friday, February 26, 2010

Day 30 / 10 at TCH







8:40 AM here at TCH in Denver and I am waiting for Connor to come back 'home' to his room from his Breakfast Social Therapy.

Last night Connor received a sleep aid for the first time since we have been in a hospital because we are wondering how much rest he gets at night. He seems very tired throughout the day which does not help all the therapy sessions he is having each day.

Looks like all my new partners in crime who are having a sick child are on the same timeline this morning since I already got to talk with Kim and Dawn on FB this morning... So Thank You for chatting :) Oh, and we so loved 'seeing' the Miller family on Skype last night!

There are a few passions I have and one is listening to music. Unfortunately I prefer the noise level to be higher then might be good for me but that is why I love my Bose Headset so much. So for me this is a wonderful escape when I feel like getting away for a few minutes. So I am hoping for all my friends that are dealing with stress right now that you can find something that will do the same for you...

My mind is working on high today so I am brain storming again and I am thinking it would be wonderful if the hospital would offer a dance once a month for the kids here. It does not matter if you are in a wheel chair or not but who does not like to get dressed up and have some fun? So tonight my plan is to play my I-Tunes and have a little dance with Connor in our room :)

Connor is having an amazing day today. I can only assume it is due to the sleeping aid he got but he has been cheerful and accommodating throughout all 4 of his therapy session, 5 if you include breakfast. He walked to his PT today pushing his wheel chair and he even attempted to go up two stairs with the help of his therapist. Those are big steps for Connor!
He also got his one hour and ten mintues of Solumedrol in him plus the Methatrexate at 12:30 PM. Friday's are big days when it comes to Connor's drugs.

As fun we got to visit the wonderful Stenzel family three times today. First for a wonderful none cafeteria lunch provided by them from McD's for Connor and Chipotle for me ... heaven! Then we came back in the afternoon with some ice cream to visit some more. That lasted for about 15 min before Connor got hungry and wanted some soup. We came back again for about a 5 min visit before Connor got tired and wanted to go 'home' to his room. Connor got a huge treat from Emma which included the coolest coloring and arts and craft table. It has pockets on the side which were filled with all kind of goodies including Connor's recently favorite 'Oreo Cookies'.

Right now it is 4 PM and Connor just got some Tylenol and is quietly sitting in bed watching 'Horton Hears a Who'. We are all still waiting for him to go to the bathroom so we can get a stool sample and no luck yet. After having three packs of myralex he might now be facing a suppository :(

So and then way up North in Alaska Ron & Alexander seem to have a most wonderful time seeing Niki, Harlow, Celeste, Sammy & Tyler. Today they went to one off Tylers Ice Hockey games and I could hear Alexander rooting on Tylers team through Ron's cell phone. So anyone wants to guess what Alexander wants to to play now for a sport?

Thank You also today for Miss Ann who has been taking care of our home and all three of our dogs for the last 4 to 5 days. What an Angel!!!

Today Connor want's me to post his second favorite song that my computer gets to play for him a lot: (yes they are not your typical 5 year old song selections but those are the ones he loves so here it goes :)

Survivor - Eye Of The Tiger Lyrics

Risin' up, back on the street
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a man and his will to survive
So many times, it happens too fast
You trade your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive

[Chorus:]
It's the eye of the tiger, it's
the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he's watching us all with the eye of the tiger

Face to face, out in the heat
Hangin' tough, stayin' hungry
They stack the odds, still we take to the street
For the kill with the skill to survive

[Chorus]

Risin' up, straight to the top
Had the guts, got the glory
Went the distance, now I'm not gonna stop
Just a man and his will to survive

[Chorus]

The eye of the tiger
[Repeats to fade out]

Hugs,

R A C A


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