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

Sunday, February 21, 2010

Day 25 - Day 5 at TCH



Twenty-five days and my first night at home. I am glad there was no hidden camera in my bedroom last night because it would have made for quiet a laugh seeing me jump out of bed several times thinking I was in the hospital and looking for Connor. I was so disoriented it was rather silly but when I did sleep it was heavenly (we actually do have a heavenly bed that we ordered a couple of years ago after spending quiet some time in the Westin Hotel Chain :)

I talked to Ron several times today and everything seemed to be going well for both of them. Connor had OT and PT again and we might have figured out how to have him participate at Therapy a bit better. When Ron called me the second time this morning he said that Connor had gone to PT, so I asked him how come he is able to call me then. Turns out my lovely husband figured they just come to pick him up and that he did not have to be with Connor. I have always gone and worked with the Therapist so was a bit worried that he send him by himself. Well, it turns out the the Therapist said the session had gone really well. So now I am wondering if by my being right there I am causing Connor to rely to much on me since we have been doing everything for him until now.... So you see how great a well balanced marriage works... I would have been clued to Connor's side while my husband felt he could use some Independence. Way to go for Ron's insight!

And here are some really good news. The Stool Sample Connor gave yesterday came back negative... so no blood there :)

Alexander and I are relaxing at home today. Earlier we were watching some Olympics and I caught up in our office a bit. It feels good to get a bit organized again.
We also got a visit from my friend Caroline who came with her Dad who offered to plow our drive-way. For those of you that know our home you also know that this is not an easy task since not only is our driveway long but it is steep as well. This was a bit of a worry of mine because we are expecting a propane gas delivery tomorrow and I was worried their truck would not make it up the hill.
So, and then this wonderful man even fixed up the Dog Run because there was a huge sheet of ice on top of it weighing it down. I think winter really arrived at our home while we were gone....
So, lovely Caroline has been my an Angel to come and give me company today and to sit, listen, having wonderful ideas and advice. She even sat down and played Star Wars Lego wii with Alexander ... bless her heart!

There were three phone calls that were also wonderful and calming. I got to talk to two of my sisters who each have their strength in what advice to give, and then I got to talk to a friend who has been close to my heart since we both started working for AA in 1996. I always teased her that of us three room-mates she was the brain and organized one.. so I should have known that it would be her that talked to me about our health care insurance and what I need to do in regards to calling United Healthcare in the morning. What a Network we have!

Connor and Ron seem to be doing well at the hospital all day since each time we talk they are watching a movie or they they are eating :) Connor did get a shower today but unfortunately did not cooperate for a hair wash so I am going to get inventive on how to go about to clean and cut his hair when my turn comes on Tuesday.

Another really up-lifting news is that by tomorrow my parents should have booked their flight here to Colorado and if all goes well they should arrive by March 3 or 5. This will be true heaven for Alexander since we strongly believe what he craves the most right now is a schedule and some stability which my Parents can provide, plus of course some well earned attention.

So I am off to spend more time with Alexander and one more night in my 'Heavenly' Bed. Oh, I do have to mention the Shower this morning was divine :):):)

Hugs,
R A C A

1 comment:

  1. God sends us our angel friends when He knows we need them most. You are so blessed to have so many wonderful friends & family. Praying for Connor...
    Alison

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