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

Friday, June 3, 2011

Dreamnight at the Cheyenne Mountain Zoo, June 2011

Have I told you before how much I love the Cheyenne Mountain Zoo? Well, I LOVE THAT ZOO!!!

It is a privately run Zoo that has true heart and love for the Animals they care for and in an extraordinary way their focus is on making Children happy AND educate them along the way. We as a family have fallen in love with this Zoo since we moved to Colorado 4 years ago. The boys had their 5 year Birthday Party there (Lion Themed) and they went to Zoo school there for a week one year. We had the pleasure to be part of the birth of a Giraffe Baby through Video and we have cried when one of our favorite Giraffes died. We were super excited when we received an exclusive invitation for a private Event called a Grizzly Bear Dreamnight while being at the Infusion Center last month. This was a special invitation event for Children with Serious Illnesses and Diseases and the beauty was that only immediate Family members could accompany the child. It was noted in bold letters on the invitation that most of the children present have compromised immune systems so to please stay away if anyone in the family has been exposed to any contagious disease, cold, flu etc etc.
It is absolutely true that my boys have been looking forward to this Event for weeks. For them to be around children who are sick as well but also to not worry about being exposed to anything contagious is a gift.
There were some sad news this morning when I told the boys that Elson the Male Lion died yesterday. Of course the boys were very sad and they went and made beautiful Cards for the Zoo with Pictures honoring Elson.
The Event started at 5:30 pm tonight and of course is was amazing. We stayed until 8 pm and in between that time we got to see Animals alert and awake. The Tiger was jumping, running and swimming in his pond. The Grizzly Bears we got to see from 4 feet away being fed and trained. This is not some training for them to do tricks but to teach them how to move so they can be weight once a month and how to position them for easy access when they need shots and medical attention. The wolfs were out and howling, a big Tortoise Turtle was actually not so much walking but running through the Zoo :) There was free face painting, free Pony Rides, free Carousel Rides and Science tables. I have never seen so many wheel chairs in one place and of course at closer look you saw how many kids were very sick but also as Connor and Alexander pointed out there were many kids who looked just like them from the outside. See, that is where I think kids like Connor suffer mentally the most from. He looks 'normal' but he knows he can not do all the things healthy kids can do. There is always some limitation or the possibility of a serious complication to his health. Exposure as I wrote in my blog before is always a chance we take. So, while many say he acts and looks great please remember this is a child who still is on weekly Chemo Treatments, daily Cyclosporin and Prednisone (less each month Thank Goodness) and the monthly IVIG. So, tonight was a night well deserved for all those children, Connor and Alexander included. They miss out on to many things that families with healthy kids take for granted and they should have days to shine like tonight. As it was, Connor said to me that he loved that everyone there was as normal as he was .... I am actually getting tired of the label 'normal' so I have to tell him that everyone there was as unique as they are :)

So how can I ever say Thank You enough to a place like the Cheyenne Mountain Zoo, Make A Wish and Starlight for making dreams come true for Children who need them more then ever? For Children who should see more laughter and feel happiness more often then pain and frustration.

A very grateful Mom tonight to those that really 'get it'.






Hugs,

R A C A


2 comments:

  1. I happened upon your blog and I am so glad I did. I was one of the docents by the lions on dream night, and I have to thank you and your boys. That night was difficult for my friend, Jeanie (the other docent) and I. We had been looking forward to Dream Night, as it is a special event that means a lot to the zoo and the docents. Unfortunately, with the passing of Elson, the lions just weren't where Jeanie or I necessarily wanted to be...it was too emotional, too painful, well you get the idea.

    We had been having a really difficult time of it, and then your boys came along. They were amazing. Their cards that they gave us have touched many people. We had a year-end docent meeting the following day in which we shared these precious cards with the other docents. After the meeting the cards were given to the administration. On Monday I spoke with Bob Chastain (the president &CEO of CMZ) to make sure that he saw the cards as well.

    I know that Dream Night is meant to be a special evening for families such as yours, but the tides were turned and instead, your family made it special for a few docents (Jeanie and I) that were having a tough time of the loss.

    My prayers go out to you and your family, but I wanted you to know (as though you don't already know how special they are) that your boys are truly appreciated, and whether they know it or not, they have a special place in our thoughts and hearts.

    DiAnna (docent at Cheyenne Mountain Zoo)

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  2. DiAnna, You just made me cry. I did not put in the blog how the boys actually cried all morning about Elson and how hard it was for us to walk up to the Lion Exhibit, but we knew if all of you can show up and make this night magic for us families, even thought you just faced this heartbreaking loss just hours earlier, then we could do at least show you much the animals and all of you mean to us. I believe in the magic of Children and Animals and you and your fellow Docents have been so wonderful and patient in educating our children. We are the lucky ones. Thank you for keeping Connor and Alexander in your heart. To me of course they are the world :) but it is nice that others see how special they are :)

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