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

Sunday, May 1, 2011

Not enough hours in one day ....

I know, I know :) it has been a complain many have mentioned before that we just do not get enough hours in one day but it really is true for me lately.... I could use about 4 to 5 hours more and the problem I run into as of late is that I end up in bed by midnight or 1 am. This is a very crazy situation for someone that needs about 12 hours of sleep on average ;)

In my mind I have this perfect laid out plan for how my day should run. When the boys were small I called them our Groundhog Movie Days, where each day was scheduled exactly as the day before in regards to when the boys woke up, ate, played, napped, ate lunch, napped, snack time, played, had dinner, bath-time and back to bed. We truly kept that schedule for about 2 years and the boys did so well on it. They had a happy disposition on a daily basis. Now that we Home school I like to have a rhythm as well. If I could force it I would like for us to get up between 7 and 8 am, have breakfast and be in school by 9 am. School usually lasts between 2 1/2 to 3 hours, so at noon we have lunch followed by nap and quiet time until 3 pm. We then have Coffee and Cake Time followed by free play time (preferable outdoors) for the boys and for me time to clean, wash laundry and catch up with Paperwork until it is time to start Dinner at 5 pm. We always try to eat at 6 pm and then it is bath time and quiet reading time for the boys and us. Bedtime at 8 pm and time for Ron and I to relax and read, watch Netflix or play scrabble. I should then head to bed at 10 pm and all would be perfect :) There are days like this and I love them, unfortunately they are not as frequent as I like.
Here is why I am not getting this schedule as much as I would like to see it lately. For one we are always under pressure to catch up on school since we started two semesters behind, we then deal with weekly Therapy and Doctor visits that interrupt our days as well. So now we are having school six days out of seven and on top of that I added a new focus for myself as in to getting educated about money and investments. It seems it is not as easy to win the lottery as one would hope for especially when you don't buy a ticket. I also would love for my husband to retire but JDM has thrown us a curve ball on that end. So dealing with medical bills has taught me one thing ... not being happy about something does not mean you can't ignore it. I have always taken care of our bills and we have always been able to pay our bills thanks to Ron working but I now want to know how we can be smarter about how to pay off bills and also invest some money into savings. I am not a risk taker and that is one reason why I would never make a good gambler. I like to hold on to what we have but I was also upset to see that you get only about 1% interest for your savings compared to the 5% four years ago. So if you all my dear friends have sound ideas send them my way :)
So now I made it a point to read books on money before bedtime and that usually gets me all wound up. To relax I then turn to Netflix and watch my favorite shows of Dexter or Prison Break. Now those I found are not made for sweet dreams either. While they might be very fascinating and addictive they also  cause me to have the strangest dreams when I do go to sleep.

All of this is part of another point ... my Day is so stretched thin that I do not have time for anything to go wrong or for any interruptions in any form that mess it all up. So, right now I am not to happy about CenturyLink who had promised us we would save $20 if we switched our Internet Satellite over to DSL. Same speed and savings, sounded good but why oh why mess with something that works? It turns out we tried to switch today and after 3 hours of it NOT working they then told us that we needed an additional Router. THANK YOU husband of mine for unhooking CenturyLink and hooking up SkyBeam again. For once I would love for something to work out as it was promised. Why I am still surprised when it doesn't is beyond me ...
I also are very bad about phone calls. I try not to answer the phone when the boys and I are in school, we are eating or we are observing quiet time. That leaves me with one hour I found out of when I can make or take phone calls - 4 to 5 pm. Now you might realize why I cherish e-mail, Texting and FB :)

I am truly craving to have one week or several weeks of 'Groundhog Day's'. If you do not hear from me then know it is due to me trying to make this work or being passed out asleep somewhere while trying to catch up on all the hours of sleep I am missing out of lately.

Hugs :) and happy to know that at least our dumplings are getting sleep :)

R A C A

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