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, June 9, 2011

OT Evaluation and Bike Rodeo

Yesterday when the boys and I got back home from the Bike Rodeo in WP Ron  told me that Connor needed an OT Evaluation done the next day. We had the option of 8 am or 11 am and since it takes us 1 hour 15 min to get to the Therapy Center we took the 11 am gladly :)

I admit my mind was split about what I wanted the outcome to be for this Evaluation. As much as we love Hippo Therapy and the credit I give to Hippo Therapy and Amanda for getting Connor better, I was also hoping that Connor would pass the Evaluation so I could close one more chapter on JDM and the long weekly drive to Hippo Therapy. It would have freed up one more day and of course saved us some more mileage and gas money on my car.
Well, as I said from the very beginning of this Blog. We will do whatever it takes to get Connor back to 100% and that is exactly what we will keep doing :)
Amanda did a very throughout Evaluation that involved strength, endurance, Fine Motor Skills and Left, Right, Hand and Feet Coordination. Most of the exercises were timed in seconds and in the end Amanda told me in what age he fell as in the things he was able to do. It started really well in regards to Fine Motor Skills were he was actually rated at age 10 to 11! He then had a few skills that were around his age but he scored very low (age 5) for his core body strength and his Body Coordination. To explain it a bit more blunt he was unable to dribble a ball, catch a ball (Tennis Ball), do jumping Jacks or jump and switch his right and left arm opposite to his legs. He also could not do a sit-up by himself. He could when Amanda help his legs. She told me that was due to the superficial stomach muscles being strong BUT not his inner and core stomach muscles. On the other hand he did very well in his push-ups and laying like Superman (laying in your stomach and raising your arms and legs), Amanda started counting to see how long he could hold this position but we quit counting around 40 :)
So, I actually was not the only one surprised at this because Amanda told me that she went into this Evaluation thinking he would ace it as well. We both know he made tremendous progress through this last year (from not walking to walking and running :) and the good news is that this Evaluation opened both our eyes to what needs to be the main focus from here on. 
Something that struck me the most however was the fact that I am pretty sure if Alexander had taken this test he would have scored just like Connor. I always joke that our boys are no born Athletes but this showed me why this is not their strength. In reverse the Fine Motor Skill Test had Connor trace, write and copy pictures of forms put in front of him and this is where we was rated at age 10 to 11. This I can say honestly did not surprise me because there is no doubt that Connor and Alexander have an eye for details and a very artistic streak :)

So, as you see it was good news that we found out what the focus will be for the next year and the sad news is that I wanted to put Therapy behind us when we are really not in a position for it yet. So 'patience' is the word for me again. Something I am not always the best at - haha

We did have a really fun outing yesterday however. The City of Woodland Park put up a Bike Rodeo for kids to practice their Bicycle Riding Skills and also learn how to ride in traffic. Connor and Alexander did wonderful considering they have only been on a bicycle for less then a year. If you know our Home you know we do not have a great setup to ride Bikes. The only area the boys get to practice so far has been on the little concrete pad next to our house were we used to park our travel trailer. The boys loved the Bike Rodeo and I loved seeing some of my favorite Colorado Mommies/Friends there :)

For myself I found a new hobby but I am not sure if it is a good thing or not. I started about a week ago to organize my pictures and of course started out from the beginning. Well, I have been in a kind of sad mood ever since I reached the stage of Niki when she was in her teens and when the boys arrived. I made it now all the way up to 2007 but I have to say it is hard to look at some of the pictures and looking back at how precious this time was. One of the great finds for me started in April 2006 when by pure chance I met another Twin Mom, Heidi, at the North East Mall Toddler Playground. She was just about to leave when I arrived and of course seeing she had twin boys as well we started talking. It turned out her boys, Dylan & Ryan, were just three months older then mine and on top of that we were both 'retired' Flight Attendants. She used to fly for Delta and I for AA. We instantly connected but so did our boys. Move forward a couple of weeks and Heidi e-mailed me about a Multiples Club in Keller and if I would try it out with her. So the two of us went and that first time there we met another first time Twin Mom, Sonya. Turns out she had twin girls just three months younger then mine. To me it seemed like the stars were aligned because all of a sudden I had two Mommy friends who were just amazing. They are both smart, funny, beautiful and the kind of friends one can only dream of having. The true magic came when all our kids came together and 'clicked' but on top of that all our husbands got along as well. Now that is a dream team. How many times do you meet people where the wife's like each other, the kids get along and the husbands as well? You think this would only happen once in a life time but crazy me hit the Jackpot again when we moved to Colorado and I met Allison and Caroline. Once again great kids and the husbands like each other as well.
I am getting sidetracked because there is a reason for this post :) As I said, Heidi, Sonya and I met in April of 2006 and to me we are all now much more  then friends. To me they are all family. I love them all and my life and my families is so much better for knowing them all!
Today is Addisyn's & Kerenza's 7th Birthday and I wish I could just write a whole blog about them :) Both girls are so wonderful. They are cute as buttons and they are so smart it just puts me in awe. From the six of our kids they were the first walking free of a Stroller and sitting still at our weekly Starbucks meetings. They were the first talking and potty trained. I know my boys think that they really must be a year older not three months younger - haha.
We are so proud of them and I for one can not wait to see them grow up :)
So Happy Birthday Addie & Ren. 
We love You!





R A C A


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