Teleclass is working out well thus far for Kody.  His case manager made mention of a social get together for the students and he showed interest in attending.  They will meet up at the bowling alley right down the street which makes it convient.  This is the first time he has showed interest in an event like that. 

Kody's cardiologist mentioned wanting him to see an Orthopedic doctor for an evaluation of his scoliosis.  I'm looking into making the appointment for this to check the status of his back curvature.  He has begun to mention that he is having back pain that requires motrin.  Since he is in no condition to have the surgery to correct his spinal curvature, the only option is to manage the discomfort. 

It's hard to see things that I can't fix.  He has a great spirit and way about him.  Over all he is a great kid.  Well I mean great young man. 

He's managing his own school work with some assistance when it comes to writing or project throw together. 

Halter Monitor Results

It had been a bit since we mailed back the halter monitor to St. Josephs Hospital and I hadn't heard anything back.  Most people would just take that as it was fine and no need to call.  I'm not like most people, so I called in about it.  The nurse said that things looked okay and that he only threw 4 PVC's (Premature Ventricular Contractions ) in a 24 hour period which to them isn't something completely concerning with the Hypertrophic Obstructive Cardiomyopathy.  I've included the link in case you wondered what either of those things were.  Trust me before his diagnosis I had no idea what half the things doctor's said meant.  Since the diagnosis I have schooled myself and tried to keep my medical terminology knowledge up to date.  Part of the reason for me going into the healthcare feild is because of all the medical issues that have arisen from my family tree.  Knowledge is power and I fully believe in this.

Oh and if anyone knows where to get a youth's manual wheelchair, would you leave me some information in the comment.  Insurance paid for the electric chair BUT those who have dealt with wheelchairs know that a manual is a necessity for alot of things. 

((HUGS)) Thanks for checking in on little man ......

Cardiology Vist @ St Joseph's

At 9am today we were arriving at the hospital for his cardiology visit.  We didn't leave until nearly 12:30pm.  Will thought because when we got there no one else was there that it wouldn't take so long.  Guess they had took everyone else back before we got there.  They did the EKG (electrocardiogram) and the ECHO (sonogram of the hearts anatomy) which didn't take all that long once we got back into a room.  Blood pressure was fine but oxygen saturation levels were at 96% during a relaxing state.  Once the doctor took a look over the echo and ekg he came to talk to us.  He wants us to make an appointment with the Orthopedic doctor to get an update on the status of his scoliosis which won't be an issue.  Though I did ask him to recommend a good one within the hospital because the one we seen last was an ass.  Now I didn't put it that way but Dr. M knew what I meant.  Chances are once he sees the Ortho they will want him to see Pulmonary.  So we shall see how that goes.  His heart has gone from HCM (Hypertrophic Cardiomyopathy) to HOCM (Hypertrophic Obstructive Cardiomyopathy).  The pressures in his upper chambers of his heart are registering higher than they were at the last visit 6 months ago.  This of course meant the doctor asked if I would be alright with him having a halter monitor.  It's only for a 24 hour span and so he did indeed come home with it. 


Over all this visit wasn't too bad.  Yes his heart is progressing but no medications were suggested.  This in part because Dr M know's how I feel about putting him on medications that will make him feel like crap. 

Right now we are shopping around for a new manual wheelchair until we can obtain a vehicle that can handle his electric chair.  Any suggestions on companies? 

((HUGS)) to the readers who keep up with our lil man

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.   

Easy Questions With Hard Answers

So last night there I was drinking my iced coffee when Kody plops himself onto my bed wanting to hang out for a little while.  He asked for a sip of my drink and of course I let him have a small sip.  After telling me it tasted good,  it had some hazelnut creamer in it, he asked why he isn't suppose have caffeine.  You see his heart works on over drive all the time, even when he is sleeping, so adding in something like caffeine would make things compound and his heart is already working like a race horse .. so that is why no caffeine.

Kody's Home From Camp!!!

Kody camp home from camp this morning .... and was being said good bye to by EVERYONE.  He had a smile on his face and over all you can tell he had a blast.  He said he is definitely going next year.  I put the link to be able to see his pictures via the MDA Facebook page.  He actually has a tan right now too.  He asked if we missed him which of course we did.  Although he loves to stay glued to his game and so we have to pry him out of his room.  I'll fill everyone in when I know more of what went on at camp.  Besides girls waking his entire bunk up at 1am lol.