Catchy Title? Hmmmm .........

I'm counting the days down until Kody's next appointment.  This particular one always has me nervous because it's heart status time.  The one thing his doctors always remark is that his outward appearance doesn't match the actual condition his heart is in.  Werid huh?  Partly but I blame that on genetics because that's the only thing that makes sense.  I wouldn't be sure how to otherwise explain things otherwise. 

Kody thinks going to the doctors is stupid because as he puts it "They can't fix me so they can only watch what is going on with my body."  I think he just gets frustrated that there isn't some magic cure or something for the FRDA.  If he was better he could go back to school and make friends and just be a teenager.  Boy would  he be a handful.  I'd turn grey quickly.  Or should I say Clariol would be making money off of me on a regular basis.

He had me reserve Uncharted 3 for him at GameStop today.  He sure does love his games.  I can watch them but for the most part I don't even try to play them very often. 

He's still peeling from the beach trip we made.  He asked "Mom am I going to peel forever?"  LOL you know I had to be a smartass and tell him he was going to peel for the rest of his life.  I did however back track and say it would be done soon.

Upcoming Appointment

08/05/2011 is the next Cardiology appointment for Kody.  This will give us an update with his heart status.  As it grows closer to these particular appointments I am the one who gets a knot in the pit of her stomach.  He seems to have stabilized and it should be reassuring for me but it just isn't realistic to just sit back and think things are as they seem.  School starts back soon for him which he of course probably has mixed feelings about.  This means stricter bedtimes and homework but he does like the weekly visit from his home bound teacher.  Gives him some outside connection and I am pleased with how his teacher interacts with him.  We have gotten lucky thus far and only had one of the home bound teachers that we had to have reassigned in all the time he has been on home bound.

He had a blast at camp this year.  Made some friends and seen some familiar faces from last year.  I'm happy he has the opportunity to have that week away where he can be without us and doing his own thing.  After all he is 15 years old and should in all rights be able to do that in everyday life but that's not the case.   

Kody has an appointment the 26th to see the MDA clinic and to see the wheelchair specialist.  This means that he will be getting fitted for new wheelchairs.  He will need a manual for some things and an electric for others.  At this appointment I will have to get the letter to enroll him in school.  The verification is to get his home bound services.  Once that is obtain then I have to enroll him in the high school then get transferred to the home bound program.  Which means that the high school will probably be fed up with paperwork by the time they are through with Kody's case but it will get handled.  He would love nothing more than to return to the 'normal' school setting and I would love nothing more than allowing him to but health doesn't warrant that.  Not to mention he would be overwhelmed if put back into the setting.  Just simply being at the pool surrounded by his able body peers would be hard and he would insist on leaving.  

The Lasix every other day has seemed to keep down the edema which has been good.  In a couple of months I will be calling the Cardiology office to set up for another appointment.  He isn't due to see that doctor again until November.  He had been seeing the cardiologist every 2-3 months but both the doctor and I felt comfortable with honoring Kody's wishes to be seen only once every 6 months.  Insurance only allows for an echocardiogram once every 6 months so the other appointments were only basic assessment and an EKG.

Once he has the new electric chair he may want to get out of the house more often.  Though he has became sensitive to the bright light outside so may also invest in some new sunglasses.