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

Thursday, September 27, 2012

MAPS Testing, Infusions, Therapy and more ...

So much has been going on in the last couple of days so I have some catching up to do ;)
Two days ago, the boys took the MAPS Test at Gateway and we went in feeling very confident on where they are academically :) well, this mommy who was not looking at the test results the right way thought both my dumplings failed miserably. Luckily Mrs. Owen calmed me down and told me the front graph was showing an older grade and that I need to look at the numbers instead! Lucky for that one!!!! Both my dumplings are were they are suppose to be and Connor even jumped a couple of grades in reading .... Happily shocked at this one ;)

After the test I decided to take Connor home as a day at Cottage plus the testing would be way to hard for him. I decided to leave Alexander in school as he had running practice after school as well. Now the second call was a huge mistake as I found out later!!! I should have taken Alexander home as well as my youngest dumpling decided to act out in every form possible. He kept our lovely Mrs. Struble on her toes all day and not in a good way. Alexander loves Cottage School and therefor his punishment is him having to stay away for a while. Since he was right on track but not as strong in his testing numbers as Connor this will benefit me so I can put more time in with him at home. So win win for me ;) Connor is thrilled of course as he has been begging me to stay home and has said the stress of our full schedule each week was just to much. So now we will stay home bound for a few weeks and see what progress we make.

The good part about yesterday was the wonderful experience Connor and I had looking at the Paintings at Park State Trust Bank in WP. Connor and I were thrilled to get a private tour with the owner and the education was amazing! Connor loved the Mattise, Picasso and the one painting from a local boy here on WP. It showed me it is time to pick up the pace and start touring Art Museums.

Now as for me ... Can you imagine the look on my face when I went in for my teeth cleaning to hear that possibly my whole tooth ache problem was not caused by my lovely tooth or gums but from my sinus issues???? All this do a cold or allergy. Darn ;)

So I told You so nicely that we will hunker down at home for a while but that won't start until Tuesday next week because today we are on our way to Alaska. We just arrived at DFW after some nervous minutes watching Frontier Passengers trying to scramble on our AA flight due to their Frontier Flight canceling. Luckily we are tough Nonrev Warriors and we did make it out, even in style up front ;)
The good news is the flight up north is wide open but the flight back is red. So we see how much time we get to spend in beautiful ANC.

Hugs,
And no pictures today as I am typing this on my lovely phone :)

R A C A

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