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.

Unfortunately because of scheduling issues the cardiology appointment has been moved to December 14th @9:30am.  While I was away in Venice the nurse from the office called to check on Kody and ask if things were alright which left me wondering why .... then it hit me 'Oh damn that was today' but the rescheduling only took all of 5 minutes to do.  He seems to be doing alright with the schooling and thankfully his dad has taken the reins with that.  You see with the work schedule I have and the other things I insist I do myself it made things easier for him to handle that.  Kody has been having some discussions with Nisa lately that she brought to my attention.  You see he tends to tell her when he doesn't feel good or has something on his mind.  I think he does that to spare me somehow which is sweet of him but not necessary.  Not that I am going to hound him about things when he is  talking to her about things.  That wouldn't be the brightest idea to do but then again you already knew that right?  (Yes I am directing that one at the readers ... HELLO btw and thanks for reading about our family and our son)

This afternoon I got the book in the mail for Kody's reading assignment and was quite disappointed.  Not at the shipper because hey they were shipping me what I asked for .. but for the level of the book because I was expecting this big novel and its only 32 pages ...... SERIOUSLY???

He has given us his Christmas list FINALLY.  On his list is a $50 PSN card, $10 Neopets card, Naughty Bear (ps3), Tekken 6 (ps3), and Resident Evil 5 (ps3).  He makes it so easy to shop for him.  Now the girls need to get us their list as well.  

Time to go ..... just thought I would take a second to update.