Kody has a new love as far as games go.  Sims 3 has become his guilty pleasure.  Being able to have a virtual life and have full control.  

I have to keep reminding him of how to sit in his electric chair.  He has a tendency of wanting to draw his feet up and sit with his knees at his chest.  Now this may be comfortable to him but it creates another problem because the muscles will contract and eventually not be able to fully extend.  I joke with him telling him I will have the company make pink foot straps with the word princess across them.  He laughs and says they don't make them like that.  Should have seen his face when I told him I could have them made for him.  

Now school is going okay for him though if given the option he would test for his GED and be finished with school.  Admitting though it would be because it interferes with his game time.  I swear the PS3 is his sanctuary.  

GAMER BACK UP

So yesterday while I slept my husband took time to replace our son's PS3.  He's such a good dad .... because I do believe this made Kody's year.  You see his PS3 has been broke down right after Christmas.  Now it's up to Kody to download his content from the PSN.  He is picking and choosing what he wants to redownload.  I still don't think he is completely done with all that.  

We aren't due for any appointments anytime soon.  I have to mail out the pre registration for camp for him for this year.  He is looking forward to going but we are trying to figure out how to get his electric chair to the camp.  Maybe I need to email the MDA and see if they can provide some assistance or we may look into renting something to hitch it onto the car.  Either way we will get it figured out before then.  Camp this year is the last week of June.  

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