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

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. 

Kody Comes Home This FRIDAY!!!

I have been browsing through some pictures posted by the MDA on Facebook from camp and Kody looks to be having a blast.  Though I had my heart drop for a moment when I did receive a phone call at a little after 11am from none other then the MDA Camp.  She quickly put me at ease though because she was like "Hi this is Paula and THIS IS NOT AN EMERGENCY"  Thank god because lord knows we have had enough on our plate without anything added on.  Turns out he did give them a scare at camp today but it was remedied by the wheelchair technicians.  The sensitivity was at 90% from his chair and so when he went onto the docks (yes I said it was figured out on the docks) the chair was weaving and the back was fishtailing.  Now anyone who knows how the relationship between me and Kody works knows that I will ask him things such as "Why are you trying to scare the ladies?" and "Where you thinking about taking the chair for a swim?"  He'll get and understand the references and find it funny.  Do we have odd sense of humors?  Maybe but hell it's better to be able to joke about things rather then always being so damn serious.

If for some reason you can not access the pictures comment below and I will be working on getting them on my computer hard drive to put onto the blog.

((HUGS)) to Kody's followers ..... we appreciate you

CAMP IS TOMORROW

We have packed his bags, cut his hair, and now it's all waiting until he has to go in the morning.  Usually I just pack his bag and don't ask him about what's going in it.  Not this year.  He had to approve all the clothes and everything.  The plan is he will have his manual chair the first day and then (thanks to Paula) he will have his electric chair for Monday thru Friday.  I will post some pictures both here and on facebook from the camp. 

Read Set Camp Time

Camp starts June 26 - July 1st.  Which means 6/25 is packing day for him. I am sure there are still a few little things we will need to be getting for him and they will get figured out.  Today we got the confirmation that his electric chair will be picked up from the house 6/27 and delivered back to the house 7/1.  He's excited about having it with him this year.  It will give him more freedom than he has had before while at camp.  Krash will be back on the scene.  Though I have tried to teach him to be safe while driving ... he is 15 and I won't be there so everyone better watch out for their toes and whatever else that will be in his way.  

He's next medical appointment is for the Cardiologist @ St Josephs Hospital in Tampa in July.  The date and time of the appointment slips my mind at the moment but that's what calendars are for.   Now to remember which calendar I wrote it in.

((hugs)) to our readers

Camp Is Around The Corner

It's that time of year again.  Mda camp is running June 26th thru July 1st.  He's excited about going especially since it means time away from his sisters and with his friends.  This camp thing has been great for him and given him connections that he might have not been able to find.  There are adaptions are top of the line so he has the opportunity to do things that during everyday life are not possible.  

Home schooling for the year is coming to and end and he has managed to carry good grades.  We've given him more responsibility for his lessons and such which has seemed to work out.  Though he needs to remember to save his work onto the computer so that it can be printed out later.  Yea he has lost a few assignments by just leaving the word document open and not saving anything.  

Medically he is doing as well as to be expected.  The progression is more evident and we're at the point of just going with the changes and coping the best way we know how.  He's due to see his cardiologist in July to get an update on his heart condition.  He hasn't took much time to complain about things so when he does is when I worry.  Then again I worry about things anyways.

Facebook accidentally disable his account for the third time and it ended up taking a well worded email to get them to open it back up.  Ticks me off when the site does this crap and then to say it was an accident.

Birthday Dinner

Tonight we went out to AppleBees for dinner for Kody's birthday dinner.  On the menu for him was the FirePit burger with onion rings.  He got surprised by the waiter with a sunday.  Yummy. 

HAPPY 15TH BIRTHDAY KODY DAVID RICHARD CHAMPAGNE!!!

 On 05/05/1996 @ 02:17am  this young man made his entrance into this world.  He was 5 weeks and 5 days premature and what was his first act?  He peed in the doctor's face and then the nurses.  He was 19 inches long and 5lbs11oz.  Over the years he has seemed to teach me as much as I have taught him.  He came into this world on his own terms and on his own time table and we love him a bunch. 

Happy 15th Birthday to our son Kody aka Lil Man.  Tomorrow we will be off to AppleBees for his Firepit burger and onion rings ... yes for them to sing to him & give him a slice of cake then home for presents and cupcakes.



LOVE YOU BUNCHES KODY CHAMPAGNE

5 Days

Kody has had a week off of school for spring vacation and wouldn't you know it happens to be a whole week without the PS3 online?  No I wasn't cruel enough to ground him for his entire vacation.  There was a breech of security and so PSN is offline until the problem is corrected.  

We received his letter in the mail yesterday saying he was accepted to go to camp this year.  So at the end of June he will be off to MDA camp in Brandon.  Part of me is glad it's close just in case of emergency.  

Medically he is doing okay.  No more doctors appointments until July when he sees the cardiologist.  

His birthday is in 5 days.  He was born May 5th 1996 at 0217.  He was in a hurry because he wasn't due until June 4th.  Can't believe he is going to 15 years old.  On his birthday I'm going to post a new picture of his as a 15 year old.  Now he can't stand me breaking out the camera but hell he can't hide from one either. 

I found myself being question by another mother yesterday and the story of Kody come rolling off my tongue like I had been telling a story about someone else.  How the hell that happened is beyond me.  She asked when I first knew something was not right about Kody.  In all honesty I had an intuition thing kick in when I was about 7 months pregnant with him but couldn't understand the reasoning behind it.   After he was born things seemed okay until he was about 3 years old and this child who's walking should have been improving at this point .... well it wasn't.  I proceeded to explain to her that I went through 4 pediatricians before getting a referral to see an Orthopedic doctor.  You see in Michigan a referral was recorded at the time.  I'm not sure if it's Neurologist.  Now by this time I am getting all the referrals needed but wondered why a Neuro when it was his legs that were the issue.  The Neurologist to date is my favorite of his doctors in the beginning because he didn't BS me.  He did a few in office test and a blood test for Friedreich's Ataxia but asked me to not look it up.  Okay anyone who knows me knows I did the exact opposite.  Reading about FRDA was like reading a book about my son.  3 weeks later the official diagnosis came in with a call from the doctor on a Sunday afternoon while I sat on the porch BBQing with my family.  I do believe that is the only time anyone has ever seen me cry about the situation.  I mean I have my moments and actually had one hell of a panic attack about a month after his diagnosis when he was then diagnosed with the heart condition that is caused by FRDA (Hypertrophic Cardiomyopathy).  Yes the hospital almost killed me by trying to give me heparin when they thought it was a Pulmonary Emolism.  It ended up just being a panic attack because it all was settling in for me. 

Wow I really ran with that story.  I will write more another time.

MDA Clinic Appointment

Today was the clinic appointment with the MDA.  This was more for the physical needed for him to be able to attend camp this year then anything.  He's looking forward to attending this year. Not sure which part he is more excited about ... activities or the girls that will be there.  Probably a mixture of both?  

Dr. F happens to be the same doc he seen last appointment and I am rather pleased with how he handles things.  You see this doc doesn't push or attempt to push ideas or/and treatments down the throat of the parents.  He listens and answers questions we may have at the time.  He lets us know what areas the FRDA is progressing from what he can see.  Kody's legs have become tight but his ankle area has is able to flexed pretty well.  And the usual about his swallowing ... slow down and take sips rather than gulps because it tires his esophagus out and if he is coughing after gulping it's because the liquid is hitting the lungs.  Goal is to prevent aspiration pneumonia.  Next appointment is due to be scheduled April 2012 right before camp again.    


FCAT testing is this week which of course Kody isn't exactly looking forward to but then again what child is.  He is rather intelligent so I don't forsee him having much issues when it comes to the testing.  

Post Check Up

Kody had a dental check up yesterday and to my surprise his teeth are in PERFECT CONDITION.  You see he picks and chooses when he brushes his teeth and loves his pop (soda) so I expected a cavity or something but nope.

Today we went swimming and he was talking to me about his back.  You see the curvature is progressing and so it is causing him discomfort.  Unfortunately there is nothing that can be done to stop what is happening with his back.  Surgery isn't an option due to too many risks.  And braces are no longer effective.  This means the only thing we can do for it is giving him motrin when he needs it.  He is such a good kid and has been dealt such a hard hand with life ..... yet he comes through it with a smile for the most part.

The final nine weeks of school has begun for Kody.  This means completing work and also making sure to keep the grades up.  Because of the way his homebound is worked out he will be a 9th grader next year as well due to the number of classes he has taken.  This time around it has been 4 and I am thinking next year will be another 3 or 4.  The schedule for the teleclass is going to have to be worked out so that it works with his schedule and our work schedules.  This weekend we will be working on completing some homework he has not yet finished.  Also as soon as his copy of "To Kill A Mockingbird" shows up he has 10 chapters to read as well as a page summary to complete.  

This Friday he has a dental appointment and his biggest concern is why Nisa has to have one the same day as him.  Go figure that be his worry and I'm not sure why but okay whatever.  He asked when his next appointment is and that wasn't hard to answer since he has an appointment with the MDA clinic at St Joseph's next Monday.  

I will update further on how things go and maybe some new pictures.

((HUGS)) Thanks for reading

Homework Catch Up .... starting next week

Starting next week Kody has to catch up with some English homework.  With the move and all that goes along with that it has fallen through the cracks so to speak.  But he is pretty good in that subject and class so shouldn't take much to catch up as well as bring his grade up.  He has been doing okay as of late.  Dad gave him a PSN card sometime today which he was excited about because it means he can get more virtual crap.  Oops did I say crap ... I'm sure I meant to say stuff.  Yup stuff sounds better lol.  He likes the new place and cannot wait to venture into the pool in the area.  We will probably need to get him a new life jacket since he seems to have gained a little bit of weight.  Yes I did say gained.  I think he is all of like 71 lbs.  

CAMP TIME

Today found myself some time to fill out the application for MDA camp for him this year.  He seems to enjoy going and can attend as a camper until he is 17 years old.  So that means another hmmm 2 years which is good.  I am not sure after that what he will get into during the summer.  He asked earlier to take a walk around the block which I ended up agreeing to.  Now this is the new block so he is interested in seeing what things are around.  We stopped by to check out the swimming pool which he can't wait to get into.  He likes that the inner community pool is smaller.  

We have an appointment April 11th to go to the MDA clinic and get things taken care of as far as the health clearance forms required for the completion of the application process for camp.

While on the walk we came across a neighbor so Kody got to interact with her little dogs.  He seems to really enjoy dogs.  He has expressed that he misses Sandra .... a shar-pei that we had from 2003 until 2007 who essentially got sick and we had to take her into the humane society.  By the way she was a really awesome dog and we miss her dearly.

I will update more when there is more to update on.  Until then ((HUGS))

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.