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

Wednesday, January 12, 2011

Day by Day ... and never know what that means :)

Remember me, the one that said that I am more at peace now because I decided to go Day by Day instead of worrying ahead over something I can't control? That was the 'only' resolution I made for 2011 and so far it is kind of working. By being at peace to some degree does not mean I will not have days were I don't feel paralyzed by fear and the feel of suffocating by the pure pressure of everything around us.

Oh, how I wonder at times where my inner calm goes but I can tell you that in the last few days I so wanted to swear and yell at people, and that from someone who does NOT swear but does occasional yell, just ask my dumplings :), and as to swearing, well I do abbreviate as in 'Heck', 'Darn' and 'Shoot' - which I KNOW means just about the same - haha) No, I really wanted to say the real words .... so shocking to me but true!

If you are 'lucky' enough to be a friend of mine on FB then you know all about my rantings a couple of days ago. It really was the kind of day a four letter word starting with H would qualify for, and I was hoping that at anytime someone would knock on our door and offer a 'Witness Protection Program' for my whole intermediate Family in the name of being in danger of going insane .... ;)
You remember my last post about me complaining about the 60,000 mile check up on my Baby Car? Oh, how I should have bitten my tongue because right now I know that this is almost the cheapest worry of it all! Here I was being nervous about $800.00 when just a couple days later I would be faced by a phone call from Ford's Phil Long about a dooms day diagnosis for our Excursion. Not only did he say to get it driving or moving at all it would be $1700.00, no but to get it in "Tip, Top, Shape" it will be $3950.00!
So I went to bed that night not feeling all that well and then waking up at 3 AM to go to the bathroom to find myself wondering why the water was not running. Well, my brain took about 1 minute to figure out that we once again had a frozen pipe.

Then later that afternoon the worst news of all came in the form of a phone call. Our friend Monte Campbell lost his short battle with Melanoma Cancer. He was diagnosed the first week of December and never had a chance to fight it. The Doctors said that they had never seen a cancer spread this fast and at that rate. This was really heartbreaking news and our hearts go out to our friend and Monte's wife Galina!

To jump a few days ahead now, we now had the Ford towed back home and the Gentleman from Anger Management, Edward, will now work on it. I had a long talk with him and he looked at the estimate we got from Phil Long and he promised us that he will have it up and running and a much more reasonable price. We trust him tremendously because he used to work on a previous car we owned after having a run in with Phil Long, and once again their doom's day prognosis turned out to be false and we had a great running car until we traded it in. So, as a matter of fact we just got a call from Edward while I am typing here and his Estimate now is $900.00!!! PLEASE call me if you live close to us and ever need a Mechanic. I don't know why we even ended up with Phil Long this time other then the Tow Company towing the Excursion there from the Airport.

Our pipes are also thawed out again thanks to some degree of it warming up and the attention they got from Andy's Plumbing. This was the same Gentleman who worked on our bursted pipe on New Years Day. A very nice man who understand the pain of having so many issues with a new house because he is dealing with some of the same issues in his 3 year old house, thanks to it being build while he was still working in California. All the connections we make here with other Home Owners does not put a good light on Builders in our Region.

We brought in the LEXUS today for it's 60,000 mile check up and we had a new version of my car as a loaner within 3 minutes of our arrival. We just received a call from them as well letting us know that it is ready to go and that all checked out beautiful. No 'Doom's Day' prognosis from them.
I am very happy about this because we live 40 miles from C-Springs and last year we put 14,000 miles on our cars just for trips to and from The Denver Children's Hospital, the Therapy Center in C-Springs and the Hippo Therapy in Edwards, CO.

So, as you see I am going Day by day and the last two Day's have been much better. Of course a huge part of all this is having Ron home. I know he says he trusts me completely with making decisions and taking care of things at home when he is gone, but it feels so much safer when he is here and we can work as a team. Of course Ron itself is a concern right now as well as his right shoulder has been bothering him for a long time but is now so acutely hurting him that even moving his arm is painful. This is bad news as in him not being able to take sick leave because we can not loose his income and there is not enough sick leave left to cover another Rotator Cup Surgery.
I am still convinced that something triggered 12-31-10 in the way that chaos seems to follow me ... so be careful when you are around me, it might be contagious!!!

Oh, since this is a JDM Blog I guess I should tell you all that Connor's second Methrotrexate Shot in his bum went very well. He does complain about it hurting a bit but not as bad as the previous ones :) So I am hoping he can keep some cushion on his behind :)
There also are some sign's that my son has a positive outlook left in him because even thought the outings as in Skiing, Skating and Rollerblading are off the table for now, he did find a very bright spot to the fact he is wearing casts on his feet. He told me this morning that he is happy he does not need to put on shoes when we leave the house and vise versa take them off when we get home :)
We did add one more medication to his daily schedule and that is an Iron Supplement (Ferrous Sulfate 22MG/5ML Elixir). This is due to the fact that for some unknown reason Connor has been anemic ever since he became sick with JDM. None of his Doctors have a clue as to why, and he went through many testings during this last year to find a reason for this. For a while there was concern last March that he had internal bleeding's but nothing was ever found. The hope Dr. Soep has is that the Iron Supplement might help in some form. Nothing will be lost by trying this.
We also learned from Dr. Curran that there might be a problem in regards to his Baby Teeth falling out. Something about the Immune System and the medication he is taking hinders the part about his teeth loosening up so they could fall out. He already has almost full grown permanent teeth behind his bottom Baby Teeth and they are not even wiggling. So now I need to ask if this means we need to have them pulled out?

Never a dull moment in our live, but then it is ours and I would not want to trade it (Witness Protection Program or not - HaHa!).

Hugs,

R A C A

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