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, September 29, 2010

Health Screening School Year 2010/11



The picture today is from my early morning workout buddy Connor. He showed up at the workout room dressed in the Sweater my Mom knitted for him because I was working out to German Music. I have such silly kids but then its expected with me as their Mom :) and then there is a picture of all three of my men resting last week.

Late Morning the boys and I went to the School for the boys Health Screening and I know Connor gets screenings all the time but I wanted a side by side assessment for both our boys. It was also wonderful seeing Mrs. Struble their Kindergarten Teacher who truly is the most wonderful person and is the kind of teacher kids can only dream of having. I told her we are thinking of bringing the boys back to school next year for 2 days a week and she thought I mend in January and said she looks so forward to having them back :) Well, I mend next school year but it is great to know she loves having them in the class room.
Now I know they will not be back in January at this point because I think it might take me all year to have them all caught up ...

So here are the Screening Results:

Connor passed all his tests from hearing and eyesight and he weight in at 47.4 lb.! at a height of 3'11.2". That gave him a BMI of 15 at the 38th Percentile.

Alexander passed his hearing and eyesight test BUT got a Refractive Error and he seems to have no Depth Perception at all. So I have to make an appointment with an eye doctor and see what this means. The Nurse told me that children with this have a harder time to learn ride bikes and do certain Sports but the irony is that he is the one that is riding his bike better then Connor.
His weight is 45.2 lb. at a height of 4'0.4" which gives him a BMI of 13.6 at the 3rd Percentile.
He is so tall and so skinny! but if you only saw him eat!
He almost eats more then anyone of us in this household!

We also got to visit Naoma twice today and after getting some more information form her Nurse I feel more at comfort of her going home. She will stay for one more night and then there will be someone that will stay the nights with them for a bit. Unfortunately Naoma was hoping that In-Home-Care would be available but the one Agency that works in this area (the same that Connor used) does not go farther then Lake George and they live another 20 minutes West of us.

There was one heartache today for the boys and I tried to protect them from it but could only do so much :)
Yesterday we bough a beautiful Scarecrow Couple and we put them up at the front entrance. This morning I let the dogs out and when I went out a while later to give them food I saw that the man was gone! All I saw was tiny pieces of straw in our front yard ...
Well, we started school and I admit I forgot about it and then for break time the boys wanted to go out and play. Right when they went outside I remembered and figured I would get to hear about it very soon. My hope was that the girls dragged most of the body into the woods so I could just tell them he left for a trip and most likely will come back someday (the day I would have time to go and buy a new one).
Alexander came into the house about 10 minutes later having tears in his eyes saying the Man was gone. Connor was right behind him and not looking very upset at all. So I said that he just went for a trip most likely but Connor burst my bubble by saying he was sure Apple and Tasha had eaten him.
I said we could not know this for sure and send them back out to play. Another 10 minutes later they walk into the house carrying the left over body of our Scarecrow Man. He did look in bad shape I admit and the boys looked so heartbroken and asked to have a funeral for him. Let's just say I stored him on top of the wood pile and said we wait for Papa to come home to have a proper funeral.

I hope your day went well and that you did not have any trials or if you did not any hard ones.

I am packing now for our Infusion Day tomorrow and of course we look forward to Ron's arrival in the morning! If I recall it right we have him home for 3 days!!!

Hugs,

R A C A

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