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, January 27, 2011

Time at the Zoo and Happy Reading :)












I have to say I am always a bit confused when I see others brag about their kids getting great report cards when the kids we are talking about are in Kindergarten or First Grade. I so can not recall every hearing of a child failing one of those two years :) HOWEVER .... now my parent friends know my panic attacks never less about the complete disregard from my two son's when it comes to learning to read. I tried about every approach possible and even fell into the old parent trap of listening to complete strangers on how their children where reading at age 2 (okay 3 ;) and me getting frantic because my beautiful and oh so bright six year olds gave me the deer in the head light look when I even approached that subject. Now they did have the ABC's down since about age two and they knew the sound the letters made by about five but they put the brakes on my trying to put the letters together.
So here comes Mrs. Struble, our beloved Cottage School Teacher, who kept telling me I just need to be patient and that some day it will just click! Then enters my lovely friend Kim with a box of BOB Books and Between the Lion's DVDs. Now jump forward two months and I am thrilled to report that Connor is reading and hardly anything is stopping him :) Alexander is not on the same level but he is trying hard and has mastered three of the BOB Books so far.
I always wonder why I could be so laid back on Potty Training but was so stressing about reading. I guess the part of home schooling is the worry about how it will reflect back to you in regards how well your kids do academically. If your child struggles in school then you could, if you wanted, take the easy way out and blame the teachers or the whole school system. I do not have that possibility of course plus don't believe in this kind of thinking anyway. Home school or not, the parent has to be plucked in :)

So all of this brings me to our fun outing to the Zoo today. My dumplings have been so wonderful in school this whole week and I am just so proud of them working so hard that we decided to get out into the fresh air today and since we have a Membership at the Zoo it was an affordable outing as well. Now we had no idea how far we would get with Connor's issues when it comes to walking. I did not bring the wheelchair and figured we go as far as he is comfortable and even if we just visit the Giraffes it would still be a successful and fun outing. We ended up seeing the newest Baby Giraffe and getting to feed part of the herd. The best part was that the Zoo was so empty and there was a little educational part to this visit for us as well. Thanks to a wonderful Zoo Employee we learned that the average length of a Giraffes tongue is 18 inches long and that they do not like change. The exhibit was redone so the whole herd was moved indoors for the duration of the construction and when the exhibit was opened up again last week they opened the doors and to the big surprise the herd ran towards the exit and then stopped frozen in a spot when they looked at their 'new' home and did not recognize it all. In the end they all turned back around and are still indoors as of now :) I thought this tibits was so interesting!

The last five days have also been wonderful in regards to having Ron home with us. He left again today for a three day trip but will have another set of five days off when he gets back on Sunday.

Wishing all of you a great weekend and I want to Thank Monica, Celeste, Heidi, Sonya and Allison for the great feedback and input on my last blog! I so love reading others opinions :):):)

Hugs,

R A C A

3 comments:

  1. LOVE the BOB Books!- These are a must have for any beginning reader.

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  2. They are just WONDERFUL! I had no idea and they were a complete save for my sanity - haha

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  3. YAY! I am glad that they helped :)

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