New Manual Chair

A little while ago Rikki heard a knock at the door.  Fed ex was delievering Kody's new manual wheelchair a day earlier than expected.  \ First thing he said was "Wow these breaks are awesome!!" 

    Can you tell how much he loves his picture taken?  We took a walk which lead to a park trip.  Though his back is achy he insisted on taking a few trips down the slide.  This picture does not show it but we ended up having to use his chest strap to assist him in sitting up.  He made mention this morning that he wants to get a new manual chair.  Since insurance does not cover its replacement we will save up until we can purchase a suitable one.

Mid December Seriously?

Vacation has officially started for Kody from class.  Well it will after his teacher comes in about a half an hour to pick up last minute work.  I called St Josephs Childrens Hospital to schedule his Orthopedic doctors appointment.  This appointment will occur 1/2/2012 @ 9am.  This is something that will give us the status on his scoliosis as well as let us know if there is any deterioration of the spinal column due to the severity of the scoliosis.  At this point due to the cardiac advancement surgery for the scoliosis is not an option. 

He seems to be content with how things are with him which somehow puts me at ease.  I am not sure if that makes sense but it does make sense to us.  My thoughts are so long as he is happy when I am happy. 

I will update further when we have more information from the doctors appointment.

((HUGS))

Why Can't I??

On Friday Kody and I sat down to talk for a little bit before his teacher/case manager came to visit.  He asked me if he could drop his biology class.  After telling him he could not I then asked him why.  He simply explained because he just is not interested in it.  He has expressed an interest in discontinuing his traditional educational path and just acquiring his GED.  What are my thoughts on that?  I am not completely sure yet. 

He has been using motrin to relieve discomfort caused by the scoliosis.  We have been working on his posture so that will lessen the discomfort.  Though he tends to want to revert back to the way he feels the most comfortable.  We are looking around for a new manual wheelchair for him.  One that provides more stability and balance while still being comfortable. 

Right now he is still in bed.  He tends to sleep in until at least noon which the cardiologist said as long as it does not interfer with schedule that we should let him.  His body just requires more time to recharge.  I guess too sometimes him sneaking and staying up later could explain things but he is pretty good about listening to bed time settings.

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