Day 12 at Home ... Shifting Focus

The day after Connor gets his Solumedrol infusions are always the tricky ones when it comes to his moods. We might start out our day well but then his mood-swings can rise up at any moment without a warning. Today however was almost calm other then him throwing a fit when Miss Shelly was here and he was not getting the full attention he so loves now. Luckily it was not turned towards Miss Shelly but he was a bit of a brat towards Alexander, who seems to be any easy target for Connor.

We started with school time again after breakfast, and here is where I have to shift focus for now and I am realizing 'once again' how much attention Connor has gotten compared to Alexander. It does not matter if we play games that require attention and concentration or if we work on reading and memorizing. Connor is miles ahead at this point compared to Alexander. Before JDM struck and you would have asked me, I would have told you they are close to being the same in regards to how well they are learning with a small advantage however for Alexander.

Now that we are home we have tried our hardest to focus on Alexander more and the challenge he seem to be facing is in him being unable to focus or even sit still for more then 10 seconds.

When we play a memory game for example Connor will beat all of us hands down (and trust me when I tell you I gave up a long time ago to let them win :)

Alexander will start the game and pick up the same card over and over not realizing he has looked at this particular card already four times. He is constantly moving and talking and I am now trying to figure out how to bring some calmness back into him.

We did get a call from Javier today and he said he will send us some ideas on how to work with both of our boys.

That's the part of any disease I guess. It will attack everyone in the family and the impact will be felt beyond the medication that is put into the 'one' patient.

We also got a call from Dr. Soep today and I love talking to her! She always knows what to say to make us feel better and how to calm our nerves when I worry about something. We truly count our blessing all the time to have been this lucky to get such wonderful caring doctors for Connor!!!

I am still hoping to get busy on Connor's Cookbook ideas that he came up with while in Chicago. When he was just able to eat soft or purred food we made up a list on items that he seemed to like and those he did not. Granted every child will have a different taste but maybe we can come up with some examples of meals that will be tasty for other children faced with it.

Now looking back on the last four months (can you believe it has been that long since his first real symptoms?) we were mainly set on survival mode, and finally I feel some energy coming back to me to put 'my' focus on the area where it needs to be as well ... Finding a Cure for JDM. What we have done so far was damage control which would not have been necessary if there was a cure.

Every time I log into the CureJM.org message board I am hoping to not see a post from a Mom, Dad, Grandma or Grandpa that asks for help because their child was just diagnosed or is showing symptoms that has them believe it is JDM. CureJM was a true heaven send when we went on this journey and they have been more help then I can ever express.

My dream is that JDM will be a focus when it comes to research as is cancer, autism etc etc. We have some of the brightest and smartest doctors on our side and what is needed it national attention and money for research just like other groups are getting. When I watch how many millions are raised for cancer research for example then my wish is for some six figures to reach our reasearch as well :). Granted not as many kids are dying by the numbers from JDM as there are with cancer. As I said before I am not trying to take away from this but have us get the same credit. No matter what a child suffers from or dies from it should matter the same. JDM can be fatal and has been and I feel that this does not get through sometimes.

So please send some positive vibes my way that I will be able to make enough waves to get someones attention that might be able to make a bigger impact than me. I know we don't have the celebrity circle that other illnesses get but I believe we don't need it. We can do it as a combined 'force' (had to use this word because my boys love that word ... can you here them sing the Star Wars Theme Song in the background???- haha).

So bare with me if I sound like I am repeating myself. There is so much to think about and then it seems like there is so little time in the day :)

Love,

R A C A

P.S. The picture posted today was us in Alaska last year visiting with Niki. It was a great time and also considering it was when we found out we would be Grand Parents! :)