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

Tuesday, July 10, 2012

Busy Summer Days and thoughts :)

So here is the irony in so many of our hopes and prayers. We were so hoping to see some rain to get some comfort from the fires and the dryness we have here in Colorado and vola we end up with getting beautiful Summer Storms that brought rain each day (five in a row). Now we are all under Flash Flood Warnings, especially the areas that had the fire.
Yesterday we drove up the Ute Pass, HWY 24 West, when the Red Code Alarm went off on my phone, warning me about possible Flash flood on HWY 24. Well, we made it home but just a couple of hours later there was a black soot slide that blocked 24 for a while. From one thing to the next but do not let this deter you from thinking how worth it really is living in this beautiful State :)

We had a very very busy weekend and week so far. This past weekend we put up the Greenhouse that my husband has wanted for a very long time. I admit I am happy for him to have this sanctuary even if gardening is still a foreign language for me.
I in return got something I wanted for almost two years now. A swimming pool! Not an in ground kind as we had in Texas (not in our income level anymore) but a beautiful above ground pool with a 13 foot diameter and 48 inches tall. It holds close to 5000 gallons and that should be enough to keep me cool. Of course it was also pointed out to me that it will be a great backup to supply water for our amazing Firemen should we be target by more fires again - haha.

All this was quiet a bit of work but there is always something fun involved as well. This past Friday Ron and I went out for a Date Night to the Mona Lisa Restaurant in Manitou Springs. Pure food and atmosphere heaven! We started out at 5:30 pm and had the Four Course Dinner that included Salad, Cheese Fondue, Meat and Vegetable Raclette and the finish with a Chocolate Fondue. The Service was excellent and the pacing of the meal was perfect. No rushing and just sitting back with plenty of time to talk and relax is truly something I can highly recommend. Then on to getting spoiled the following night (Saturday) the boys had their chance to cook dinner for us. A three course meal that included the weekly Countries they chose for they summer reports. We had a French Appetizer that came in the form of a Creamy Spinach Soup with Croutons, a Swedish Main Course in Swedish Pancakes with Strawberry Preserves and ending it was a French Desert that was similar but creamier then regular Chocolate Brownies. The boys cooked for over two hours and I am very proud to say that they did most of the work and I just supervised and at times helped a tiny bit. The out come was scrumptious and we had a wonderful Family Meal to remember. This Friday I am looking forward to a Spanish Entree and a Brazilian Desert :):):)

You all might have realized that I have tried to be quiet on the political front but I had a slip this past weekend and it felt refreshing to say the least :)
By now you all know that the one thing I get very riled up on is the complete ignorance of others when it comes to getting children the medical care they deserve ... not dependent on the income his or her parents have. I get so sick and tired of people acting all religious but then voting for a party or person that preaches in direct translation that only the rich should get the perfect treatments and the middle class and poor have to just die and not bother the rest of us. Oh, I forgot to mention, it is not truly just the rich but if you are a government employee you will be covered as well. Now you might know why I want my boys to either become rich or go into Politics - HA!
Now the hypocrisy of all this that makes me the most upset is the fact that people with neither (the millions in their Bank Account or the Government Job) still vote for them! I am wondering in my heart if they would have a change of heart if a complete and devastating illness hit their family, child or Adult. NOT a one time illness that is cured with a short stay at a hospital but the kind that makes you unable to work, but you have to work or you loose your Insurance coverage, or you might not be able to work as much because your child needs you at home to take care of him or her which follows with the loss of some income. Think about being hooked up to Infusions, weekly, monthly for years. The kind of illness, disease that has you go go to the Pharmacy each week and pay hundreds of dollars each month. Now luckily this is not us anymore, other then the fact that we have a son with a Disease that has no cure, but I am thanks to JM surrounded by friends who deal with this everyday and it would be extremely cold hearted from me to not see the pain and devastation this can cause. We lost two more beautiful and smart children to JM, then of course there is always Hope with us, so how can one turn their back?
I am happy for those that are able to walk around in blinders. I at times wish I still was. Don't think for a moment I crave the carefree life we had before JM, and goodness how nice that extra money would be to do all those fun things we took for granted. Yes, reading my blog shows we still have a fun life and we make a huge effort to give our boys the life we think they deserve. Why should they get less then others? Trust me all this comes at a price and the bill will come at one point but for now I am not willing to stop living because some people and politicians think I should.
I made this post longer then I wanted and here is a copy of the post I had on FB:

"It just hit me a second ago that due to Connor's JDM my world and eyes have been opened up to true sadness and pain that I had no idea existed prior in my life. I know several families personally that have lost their children or that are fighting to keep their babies alive. I also have met several Adults that are in a daily battle for their life's as well. As a matter of fact I talk to many of them daily through FB more so then to family. So if you are bothered by my political postings but have not walked in my shoes then I just hope you never will and can keep moving on through life with blinders on!"

The response was all great and positive, but then I of course have many supportive friends on FB that understand were I come from or have dealt with similar challenges. Since I do not discriminate and not only have friends that think like me I know there were also quiet a few that did not agree and therefor did not post a response. Like I said I do not wish them all of my experiences so how could they completely understand me?

Now I had one posting up that made me laugh tears because the irony of it was so funny to me. I got great responses but I did feel bad when two of my friends did share it and got quiet a bit of backlash. It was quiet shocking at first to read some of the responses BUT then I thought how great they did voice their opinions because now I am wondering if their thoughts are copied by those that did not post on my wall and kept quiet. I will add that posting into the pictures below as it comes in a photo format. So make your own judgment if you find it funny, sarcastic or if you are offended. Personally reading some of the political postings from the opposition I thought it was the perfect solution for them :)




















Hugs,

R A C A




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