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 22, 2010

Hippo Therapy :)





Do you remember when Connor had his OT Evaluation at Memorial in Colorado Springs and Amanda asked me what my feeling were about Hippo Therapy? Connor and I were very excited from the get go but we had to get approval from Dr. Soep and Dr. Pachman / Dr. Curran and have one of them sign a release form that they approved of this kind of Therapy.
We were in complete luck because all three of our very loved Doctors were excited as well and had no problem clearing Connor for Hippo Therapy :)

Today was our very first look into what this Therapy would entail. It was a good 1 hour and 45 min drive through some very gorgeous Colorado Countryside and the Pikes Peak Horse Therapy Center was everything we could have dreamed of. We arrived and within 5 minutes Connor was fitted with a helmet and then we had to wait for about another 5 minutes for Amanda to finish up with a little girl. We used that time to visit all the beautiful horses that were located in the arena and then it was time to start.
Connor got introduced to 'his' horse who's name is Blink. He has two beautiful big eyes with one being a bright blue and the other brown. At first Connor was led around the arena while he had to do some arm movements without holding on to the horse but his legs. He spread his arms to the side and then above his head. He then had to twist from left to right. After about two labs of this he learned ho to stop his horse and how to make it walk. From there they told him he could say '1, 2, 3 trot' and the horse started trotting. How I wish I had a Video Camera instead of a photo camera! You could hear Connor laughing so loud when he made his horse 'run'. The poor girls who had to keep up with the horse so there was always contact! Connor got to play some Basketball while sitting on the horse plus do five sit-ups on the back of the horse. He got to play several fun games with another boy who was also getting therapy at the same time. They did a couple of 'races' against each other having to wind their horse around some cones and then they did a little jousting where each got a lance and they had to pass a ring to each other when passing in the opposite direction.

The best part for me was seeing Connor having so much fun and not stopping to laugh or smile for the whole 45 minutes. Hands down this was and will be a huge success for Connor's journey into getting better. We will go once a week for three weeks and then one week break for the horse to get some time off and if the insurance keeps Connor is OT then he might be heading into the fall doing Hippo Therapy :)

I know that every child with JDM is affected differently and has different limitations but if you have read my blog and think your child has about the same capacity to move as Connor does then PLEASE ask your therapy center or your doctor to make this available. Even if your child's movements are less but his or hers neck muscles are strong enough it could benefit from it. I talked to one Mom who's daughter has Muscle dystrophy. The daughter looked to be about 7 years old and she was walking not as well as Connor but according to her Mom she did not walk at all but is now walking Thanks to the Hippo Therapy. Can You tell I am am Fan :)

My next goal now is to find a Riding Center or location close to our home were I could take Alexander for some riding lessons. I don't want to join some expensive Club but hopefully there is some opportunity somewhere for Alexander to get the same enjoyment out of this as Connor did.

So if you live close to me and have some ideas pass them on :)

Well, I was in such a good mood with this therapy success that I almost forgot to tell you that Connor's Infusions this morning of Solumedrol and Methrotrexate went really well. Miss Sharon came to the house at 9 AM to take Connor's blood first and then hooked him up and left. We timed it perfectly because I switched the bottles with one hour to go to our departure and I unhooked Connor with five minutes to spare. PERFECT!

So everything about today was wonderful and all that was missing but we will get tomorrow is having Ron HOME again :) and guess what he will hear when he gets Home? the same I had to listen to all afternoon now from two little voices
" Please, Please, Please can we get a Horse?????? " ... NO :)

Hugs,

R A CA


3 comments:

  1. Wow, you are so committed driving that far for hippotherapy. I also have a hippotherapy blog. Would it be possible for me to have permission to add the photo of connor doing sit-ups ( I like how he keeps his arms folding over chest) with links back to your blog?
    thanks,
    Barbara Smith OTR/L
    HorseOT.com
    HorseOT.blogspot.com

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  2. RACASmithFamily said...
    Please feel free to add the picture :) You are the first person I know now that knows Hippo Therapy and I look forward to reading your Blog :)

    The Distance is not that big an issue since we are always traveling distances since moving to the Rocky Mountains. The funny part is when we lived in Dallas/Fort Worth the milage might be closer but the traffic would still take a big amount of time out of your day when going places :)

    All the Best!

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  3. Barb ... I hope it was okay but I posted a link to your website about the Hippo Therapy on my Facebook Wall so other JDM Families could read up on it.

    ReplyDelete