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, July 29, 2010

Hippo Therapy # 2 :)




Hippo Therapy Session # 2 was on our program for today but before we left the house for our 1 hour and 45 min drive we had some free time this morning.
As it has become a habit for our boys in the morning they leave for the outdoors as soon as we are done with Breakfast.
One of the obstacles they have to overcome is the part of letting Tasha and Apple out since they are only allowed to play outside if both dogs are with them. Well, Tasha and Apple are so excited to see the boys each morning that they try to pretty much run over them. Especially Apple is over exuberant and tries to jump up. Both of our puppies out weigh the boys now by more then 20 lbs and it truly is never an issue throughout the day and just the first meeting in the morning.
This morning Connor went out by himself and when he stepped out he looked for Apple and Tasha but they were nowhere in sight (at first). I watched him through the kitchen window and he made a dash of about 50 meters to his playhouse where he is safe :) About halfway there I saw Tasha and Apple moving towards Connor coming around the side of the house and the faster Connor ran the faster the girls got. So I in return ran to the front door to call them back and by the time I got there Connor was on the first step up to the house when Apple and Tasha reached him. I tell you that I have not seen Connor ran and move this fast in seven months and to consider he was not walking three months ago! We were both laughing at what a great sprint he gave and the only ones upset that they did not get to greet Connor was Apple and Tasha :)

I went to workout after this and Connor came to join me for the end of my workout which entails Yoga. There are three poses he loves to do and I have to say it is fun for me to have a workout buddy :) Alexander usually joins us, too, but he did an experiment with Ron about what life would be like being Blind. Yesterday our boys did a pretend sword fight with sticks and Connor almost poked Alexander in the eye. So each of our dumplings got to spend some time today without sight.
Each got about 15 minutes and they thought it was fun, so maybe we need to do this for a longer time period ... not sure how to get the message through any better....

Now to the Hippo Therapy for today. It was as wonderful as last time if not better, if that is possible. Connor was so happy to see they were getting 'Blinker' ready for him when we arrived. He is so falling in love with this horse and it seems the horse likes him as much because they were cuddling so well before it was time to start. Today they added the outdoors to Connor's program and he learned how to 'steer' his horse plus how to ride backwards on him while doing the same exercises. What was wonderful to see as well is that each time he was asked to do sit-ups he would add one. First time Miss Amanda told Connor to do five sit-ups and he finished with six so then she told him 10 minutes later to do ten sit-ups and he did eleven :) He had some more playtime throwing a ball back and forth with another boy and when the six minute warning came about the end of his session he asked Amanda why it was so short today. She said it was the same timing as last time but if you have fun the time goes by very fast :)

So I also just thought about something that should have come to me the first time I heard the word 'Hippo Therapy'. Remember I told you that the word Hippo comes from the Greek word of Horse? Well, how do we Germans say to a Hippopotamus? We call it a 'Nilpferd' which translates into 'Nile Horse'. So of course this all makes more sense to me now :) HaHa

We ended up our afternoon with meeting Ron and Alexander for Coffee and Cake at Panera Bread in C-Springs. They had spend the afternoon shopping together and it was a treat to have one on one time for each of us. On the drive home Connor wanted to drive with Ron so Alexander went with me. If you have twins or multiples you know it is not an easy thing to get some alone time with one of your kids but it is wonderful and worth trying for :)

About 30 minutes after we got home and the boys had been told to sit in their beds read some books to quiet down a bit from today's activities, Connor fell deep asleep. We did not realize this so Ron by accident woke him up when checking on them....It was a good thing however because it would not go well tonight if he fell asleep at 6 PM without dinner :) our always hungry son would keep us awake at night I am sure :)

As always I hope your day went well and please click on the link to your upper right on this page to Vote for today if you have not done so yet.

Hugs,

R A C A

No comments:

Post a Comment