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

Saturday, July 17, 2010

Sanity? can anyone give me some?





Today was an emotional Day for me to say the least....

For one Sam & RW were leaving this afternoon for Ohio and we will miss them terribly. It has been so wonderful to have them here with us for the last five days and it has also been such a comfort to have them so close to us in Colorado City for the last two years. I am not sure if it is me getting older but I have a harder time saying goodbye to family and friends.

Connor had Dress Rehearsal today at 10 AM until Noon and I am so in awe of Mrs. Kathleen Mezack who took on directing 11 or 12 children in the last 6 days so the Musical can be fun for the Children but also honor God and the message it is going to send to those watching it tomorrow.
I am not sure to tell you the truth how much of the message penetrated my oldest son but earlier this week during camp both my boys came home saying they want to be Christians from now one (as if they had not been Christians) and that they will always be good now and never get in trouble anymore. I of course was cautious about that Statement but thought to humor them and see how far they will get.
Welllllll...... today when Dress Rehearsal was over I was called to the back of the Church to be shown what my little ' Angel' , Connor had done. My son thought he could pass the time between his appearances on stage by coloring his Name and his Brothers Name with a Black Dry Erase Marker on two different Walls. I was told that they had already tried to clean it off but the marker would not budge unless you took the paint of the wall with it as well. I then got a shopping list to buy a couple of items that the Internet mentioned would clean it off. So I put the list on my phone and loaded up my two dumplings, one who by then knew he was in trouble with mom and the other being worried that the loss of one of the Video Games plus of course playing time would also punish him, and we headed to Woodland Park. One item I needed to get was the Dry Erase Marker Spray and the other was Murphy's Oil Soap. When I got home I googled how to clean it and there were several comments that the Magic Eraser would help as well.
We went back to the Church at 4 PM since I was told earlier that someone would be there to open the door for us and we set up and got busy. My learning experience is as followed ... The Murphy's Oil Soap does nothing, the Dry Eraser Spray could work if the answer is to take the paint of the wall as well. The Magic Eraser did work to a small extent of lightening the marks but not taking them completely off. By then I admit my emotional state of mind was going downhill. I knew the walls have to be repainted so I am thinking how to figure out what paint we need and what color, both walls covered the whole hallway so I know it is time extensive and I was also not happy with Connor. I told him the money would come out of his savings or to really get his attention he would have to sell one or two of his Video Games to pay for it.
Right around that mindset our Pastor, Rev. Hurshel Hendrix, came around the corner and asked what the trouble was so we showed him the markings and he looked at them and said that something like this is not a worry it just makes the church complete because it shows there are Children. These are not his exact words because by then I could feel my eyes filling up with tears and no matter how hard I tried I could not stop from crying. He said I should pack up our cleaning supplies and just go home. Well I packed up still trying to compose myself when Miss Kathleen came around the corner and asked as well what is going on. So I told her again and she said just about the same as our Pastor had and also that I should not worry about something that a little paint touch up could solve easily. Well, back to crying it was for me .... I have no idea what is going on with me to tell you the truth. Anyone that knows me well also knows that crying is not something I easily do.

What still has me flustered is the fact that for the last five years my boys have NEVER attempted to color on the walls in our houses, so why now? not that my dumplings don't get in other kinds of trouble, they do all the time. I would have just preferred it to happen at home. I keep asking Connor why he thought of coloring on the walls in Church? and he just shrugs and says he does not know why he did it.
Well, this is a strange Blog Posting but it is what it is.

Hope your Saturday was less emotional then mine :)

..... I am adding this part now after a couple of hours have passed from posting the original post above. How ironic for me to think I start crying over something as simple as coloring on the wall? The last time I remember crying was when Connor got so horribly sick over Christmas and I was actually thinking we might be loosing our son.... I can not look back at everything else I faced and battled in the last six month that had me sit down and cry. If anything I was always ready to do battle!
Also, if some of you think I might be hard on Connor for coloring on the wall considering what he has gone through then I have to say 'I don't think so'. My feelings are that even if you have a child with a very serious disease I do not want to stop parenting and the way I decided he needed to be disciplined was the same way I would have if he was not sick or if it had been Alexander. So no screen time this week and handing over a Video Game that he loves might help him remember to not do this again .....

Hugs,

R A C A

2 comments:

  1. What a difficult and emotional day. I hope you get some rest tonight. I'm glad the people at the church were understanding. Hugs, Alison

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  2. Thank You Alison :) You are always such a great support with your comments :)

    ReplyDelete