Hope
Monday, April 29, 2013
CureJM Conference and the Chicago Rock & Roll Mini Marathon :)
Connor, Alexander, Ron and I are very excited to finally be able to make an appearance at the CureJM Conference!
For the last two years we made the attempt, even booking the Hotel and renting cars only to have life throw us horrid curve balls as in my brother in-law's death due to Cancer the first year and then not being able to get on a plane last year. Having to pull out and cancel at the last minute was sad to us both times but as it was out of our control there was not much we could do.
This year we are super positive it will happen as three times is a Charm and it is in the summer when the boys are out of school so if we can't get on a plane and the flights look red we have the option to drive.
It also marks the 10 year anniversary for CureJM and along with booking our room at the Conference Hotel we also signed up all four of us for the Mini Marathon.
This will be Connor's first race (walk - depending how he is feeling) since he was diagnosed three years ago. We are prepping for it at home with him participating for the first time at the School Running Club and also possibly attempting a 5K this June to see how he can handle it.
I admit my biggest concern is his mind set. He wants to do it and begged us, too, but then gets very frustrated when he comes in last. He knows in his heart that the success comes in finishing and not in what time frame. It is interesting how our mind set wants to will things to happen even if our bodies are unable to accommodate at times.
We set up a First Giving Page and we hope you can Sponsor Connor in this attempt and give him words of encouragements. He will be so proud doing this race and then to be able to hand a check to CureJM. The final race for all our JM/JDM/JA is of course to help find a Cure.
http://www.firstgiving.com/fundraiser/racasmith/chicagorockandrollminimarathon
Hugs,
R A C A
Friday, April 19, 2013
Trying to catch up ... Some great JM News!!!!
I know there is a lot I need to catch up on but since we got some wonderful news yesterday that are JM related I wanted to jump back in and update you all :)
Yesterday was our 'usual' Thursday when we head down the 'Mountain' to catch up on Medical Appointments. We had already stopped at Iron Horse Pediatrics to pick up some Prescriptions and went over to Memorial Healths Therapy for Connors Physical Therapy App.
I was sitting in the waiting room with Alexander and thinking how it has been almost a year again for us coming here and if there would be some light at the end of the tunnel......
When his therapist came in after Connor's session she asked to talk to me in the hallway. She told me that she things she has gotten as far as she can with Connor and that she measured his strength in his legs and the numbers were normal for a 9 year old boy :) The rest of his tightness can be worked on with his braces at home!
So FREEDOM for us from one more medical Appointment. We are all thrilled and so happy about this!
Reflecting back it has been close to a one year journey since Connor's Flare that started up after he went to the JA Camp that caused his emotional breakdown. I truly still believe that stress caused that flare last year. So it took him 9 months to get back to where he was!!!
I am now hoping we can get through the summer with no flare and no more repeat of what happened last year.
Ironically, the invite for the JA Camp came in the mail last week ... Connor is once again asking and begging us to go.
Ron and I are both on the same page on this one and think he needs to wait for one more year before he tries it again. It is not worth the risk and while he is a year older we are still not sure if he is mature enough yet to give it a try again.
Next week will be VERY busy with the boys yearly State Tests being done at Gateway Elementary. First up is the MAPS Testing and two days later is the writing test that is 3 hours long.
Wish them luck and also as soon as I get some time I will update you all on our fun Germany Trip :)
Hugs,
R A C A
Yesterday was our 'usual' Thursday when we head down the 'Mountain' to catch up on Medical Appointments. We had already stopped at Iron Horse Pediatrics to pick up some Prescriptions and went over to Memorial Healths Therapy for Connors Physical Therapy App.
I was sitting in the waiting room with Alexander and thinking how it has been almost a year again for us coming here and if there would be some light at the end of the tunnel......
When his therapist came in after Connor's session she asked to talk to me in the hallway. She told me that she things she has gotten as far as she can with Connor and that she measured his strength in his legs and the numbers were normal for a 9 year old boy :) The rest of his tightness can be worked on with his braces at home!
So FREEDOM for us from one more medical Appointment. We are all thrilled and so happy about this!
Reflecting back it has been close to a one year journey since Connor's Flare that started up after he went to the JA Camp that caused his emotional breakdown. I truly still believe that stress caused that flare last year. So it took him 9 months to get back to where he was!!!
I am now hoping we can get through the summer with no flare and no more repeat of what happened last year.
Ironically, the invite for the JA Camp came in the mail last week ... Connor is once again asking and begging us to go.
Ron and I are both on the same page on this one and think he needs to wait for one more year before he tries it again. It is not worth the risk and while he is a year older we are still not sure if he is mature enough yet to give it a try again.
Next week will be VERY busy with the boys yearly State Tests being done at Gateway Elementary. First up is the MAPS Testing and two days later is the writing test that is 3 hours long.
Wish them luck and also as soon as I get some time I will update you all on our fun Germany Trip :)
Hugs,
R A C A
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