Finals Are Over!!!

Kody has finished his finals for school and feels confident that he has scored well.  His dear Playstation 3 is still on the injured list and it doesn't look like repairs are going to do anything for it.  He has been able to play the Wii with his sisters which has been a good thing because he is so into video games there would be no way to quit cold turkey.

He will be 15 this May.  Wow how times flies.  It has taken me this long to put on the back burner how long since he has been diagnosed with this illness.  You see it's not something that is forgotten because it has changed all of our lives.  

Anyways I try not to spend too much time focused on that.  He is a happy, well adjusted (and sometimes a smartass) .... teenage boy.  He is into video games and girls and probably would have him a steady girlfriend right now if he was in school.  

There are a lot of what if's that I'm sure he has but he never says anything to me about it.  Lil man has such a strength

Rest in Peace Sheila .....

Kody nicknamed his PS3 Sheila when he first got it.  Well after getting the games he wanted for Christmas ..... the PS3 has stopped working.  Now it's a waiting game to be able to purchase another system.  He was like "Mom is it fate messing with me or something?"  When I asked him why he was like "Because I got games I like but now the PS3 won't let me play them."  

Okay first thoughts were that the games had fingerprints on them .... it wasn't that.  Next was well maybe it will cool down and work again because he had had the system on for a little while.  NOPE.

So for now he is only able to do limited things on the system ... like play a couple of games he downloaded onto the system.  Other than that it's not working.  

Working on getting another system when we can but for now he has to wait for a little while.  

Back to Manual for The Weekend

Kody is back to his manual chair for the weekend.  The mobility specialist came to get it to prep for his appointment on Monday with the Physical Therapist who ordered the chair to begin with.  He keeps asking if we can start a tradition to open one gift on Christmas Eve ..... uhh nope not happening.  He seems to be doing okay and is excited that he doesn't have school for the next couple of weeks because of Holiday vacation. 

Cardiology Visit

We had a visit with the cardiologist at St Josephs this morning at 9:30am.  The routine test were done on him.  He is all of 72.6 lbs and about 4ft8in.  The doctor didn't say much about the EKG.  The echo that was done today shows he has had some changes but nothing hugely significant.  The thickening in the muscle has increased but the mitral valve isn't regurgitating anymore that it already was.  Of course he advised we use the Lasix only when necessary because it could cause a lack of fluid in the system making it more taxing on the heart then things already are.  He talked about doing a halter monitor on him during the next visit in 6 months.  Also said that we may want to discuss medications again on the next visit.  But he understands my reasoning for steering away from medication that could do more harm then good since the heart of a FRDA person is different.  


We will deal with things as they come. 

Upcoming Things

This week coming on Tuesday Kody sees the cardiologist at St Josephs.  It's a little overdue for his check up and so we are taking care of that before the end of the year.  This time around he'll have an EKG and an echocardiogram done which will give a clear picture of the status of his heart.  He loves his new electric chair .. with that there are a few loose ends to tie up.  So the following week we will take him to the hospital so they can do the once over and make sure his chair is working out well for him.  He has had a few bumps or so but all in all it seems to be working out just fine for him.  

He is taking the Lasix as needed now which isn't very often so that's a good thing.  I will update everything after his cardiology visit.  

((HUGS)) to the readers

His New Ride Has Arrived!!!

Check out Kody's new chair.  This is him displaying the lean option that is has.  Now do you know he also asked if he could sleep in this chair?  You know my answer was nope.  But this chair was cause for rearranging his entire room.  THANK YOU NISA!!!!!  It definitely didn't take as long as I thought it would.  The look on his face was PRICELESS when it came.  He now has a new gadget to drive me crazy with but as long as he is happy (and not hurting anyone) then I am happy for him. 

HAPPY THANKSGIVING everyone!!

Kody liked having everyone over for Thanksgiving but once he sat down to eat dinner he got quiet.  I asked him if it was just a lot of noise and he shook his head.  He ended up needing a dose of Lasix today as well as a dose of Motrin.  He seemed to be just more fatigued then usual but wanted to try and hang out.  Now that all the family is gone he is chilling out with the girls and Tony.  He is also already counting down until the Christmas vacation time he has off of school.