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.

Officially 3rd Day Of School

Today made the 3rd day Kody has had class.  So far he is okay with it and his dad has been alot of help with things.  We have decided to have the new IEP modified to drop one of the classes and see how things go.  The class load handed to him originally was too much.  Especially considering that he has to catch up with the time missed out on while waiting for the paperwork to be completed so he could start.  He has been doing okay otherwise.  Nothing new to report other than a few aches and pains that have required some motrin.  No news on his chair as of yet.  It may be into next year before his chair is even more than a thought.  Bummer was he was hoping to be driving it for Halloween but for now it's just the manual chair.  He's not liking the bedtime schedule but knows he has to abide by it because of school.  Tomorrow he is getting up a little earlier so he can read up on something he has to do. 

School Has Started

Today is Kody's first day of schooling.  I received a call a few days ago letting me know that things would be starting up.  After considering everything we are already modifying the schedule given.  Originally it was English 9:30-10:30 (Monday and Wednesday), Reading 10:30-11:30 (Monday and Wednesday), Biology 2-3 (Tuesday and Thursday), Intensive Math 3-4 (Monday and Wednesday) and then 1:1 on Friday for Algebra 12-3:15.  Still working the kinks out but am going to drop his Biology class and see what else can be worked out.  

We haven't gotten any word on when things will begin for his new electric chair.  Between insurance rules and everything else, I'm opting to not put a whole lot of effort into worrying about it.  

Will update more when I have more obviously.

It's been a week since the meeting with the school and we haven't got any ideas when things start up for Kody.  Tomorrow going to pick up the phone and get some answers ... especially considering the first 9 weeks of school are about to be finished.  He seems to be doing alright medically.  Maybe more unsteady and his speech is slurring more at times which frustrates him.  I mean who likes having to repeat themselves?  Not me so I know he don't like to.  We are working towards keeping him on a bed schedule because it helps him function better during the day.  Though if he was to be asked he believes the bedtime schedule is stupid.  But then again what teenager doesn't.  He sees the cardiologist the 28th of this month.  This will be giving a full picture of where his heart status is now as opposed to 6 months ago when he had the last echo.  He hasn't been needing the Lasix as often so we are playing it by ear for now.  

Tomorrow is the first day of October which means there are only 2 months until Christmas.  Ouch lol.

Here we are in the middle of September (basically) and we just had the meeting for the homebound this past Thursday.  It has been decided for him to have teleclass twice a week and then some in home instruction which thankfully will be done by his teacher from last year.  This makes me happy because the teacher is a good one and meshes well with Kody & his quirks.  (Yes I just admitted our son has quirks. LOL)  Now he would prefer if we chuck the whole idea of school out the window but that's not happening.  

He has a cardiology appointment set up for 10/28 @ St Joes which will be when he gets the next echocardiogram and EKG.  Kody has complained more the last few months about aches and pains therefore requesting motrin for the issues.  Falls are something that is of major concern so we are keeping an eye on him and helping where we can.  

He and Rikki have their on and off days.  By that I mean sometimes they are the best of friends, hanging out and giggling.  Other days they can't stand each other.  Now as far as him and Nisa goes ... that's another story.  He is fine with her so long as he doesn't have to hear about her boyfriend everytime he turns around .. and as long as she knocks before coming into his room and says why she is coming in.  

 

On the 16th we will have a meeting for the IEP update for Kody.  This will start what it will take to get him started in school.  He would prefer to not deal with school but then again what teenager likes messing with school related activities?  He shooed me off this afternoon after getting him lunch which was a shocker.  He didn't want dear old mom sitting there while chatting with him.  

 

I contacted the cardiologist to make the 6 month appointment for Kody.  Originally I told them either October or November but their calendars for Nov aren't up yet and I spent 45 mins waiting for someone to pick up.  So we scheduled the appointment for 10/28/10 @ 12:15 with his all the time cardiologist.  Then it was time to call about the schooling.  The original time and date for the IEP meeting was 9/16 @ 1:30 but that would be impossible since it collides with the time Rikki is due out of school.  Now I am waiting for a call back to see if we can get 9:30-10am for that same day but if not it will be rescheduled for another day for the morning appointment.  

Kody has seemed a bit off the last couple of weeks.  He is still joking around and being a sarcastic 14 year old but he has seemed weaker.  We are trying to make sure he gets adequate sleep and such so just a matter of paying attention to things.  

I wasn't able to take him to the Jerry Lewis Telethon like I had planned to due to working that night but I heard they were able to raise alot of money to go towards alot of things.  Thanks to those who donated.  I'm trying to find a way online to scroll through the whole things to see if Kody was featured in any of the footage they played.  But that might not be possible.  
 

I called to see what is going on for Kody's schooling this morning.  Apparently HE'S NOT ENROLLED FOR HOSPITAL HOMEBOUND THIS YEAR!?!?  Now this would make sense had he been okay'd to attend onsite schooling but his health hasn't improved so he isn't able to attend.  Last year I went through this whole thing and ended up completely frustrated.  I've left a message for the handler of the program to call me back so we can clear this up.  School begins August 24th .... NEXT TUESDAY!?!  On top of that our desktop computer crashed so any online classes are out of the question.  Why?  Because it's just not happening.  Next thing will be to replace the computer but right now that's not something that can be done.  UGH!?!?!

My Montage 8/14/10 at OneTrueMedia.com

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Kody thought his PS3 broke yesterday but it's working today.  He ended up having to take some motrin earlier because his back was hurting.  It's the first time in a while he said anything about hurting.  It seems though it has taken the edge off because he said it felt better.  

Next week I have to call and get the ball rolling for his schooling.  Will update further when I have more details.

Within the last couple of days I have connected with 2 parents who's children are recently diagnosed with Friedreich's Ataxia.  What makes them stand out is the fact that their children are 7 years old .... the same age as Kody was when he was diagnosed.  Them asking me for advice on things brought to the surface how I felt when we received the diagnosis for him.  One family had a couple family members previously having the diagnosis so they knew a bit more than a regular newbie.  But the other family was all new to it.  I gave some details to what has been the progression for Kody without going to far into detail.  This way they have room to ask questions when they are ready.  My biggest piece of advice though was to be honest with their children.  Yes the diagnosis is hard for an adult to handle but children are more adaptive.  From the moment I knew what he had I have made a point of talking to him periodically about it.  At first it was in terminology that a 7 year old could understand.  But we have made sure he knew the name of his disorder.  Some people may think it's harsh to burden a child with such information but giving him a reason why he was having a hard time walking or for the terrible cramping in his legs afterwards or the falls ..... it let him know we knew what was going on and would just take precautions to prevent what we could.


As I sit here I realize how much things have progressed with him and how different things are now.  3 years ago he was attending school instead of being home bound.  4 years ago he was able to spend the night at a friends house and goof off with his peers.  He was a social butterfly and has now become a wall flower.  At times uncomfortable in his own skin but being the trooper that he is .... he makes the best of things.  Lord knows if I could make things better I would.  He is such a handsome and intelligent young man.  His earthly body just doesn't do him justice.  Everyone who meets him falls for his big brown eyes and witty charm. He has been a ladies man since before he could talk.  

I would love nothing more then to be able to put him into school and allow him to around his peers.  Let him have the first year of high school the way it should be.  But with the progression of his heart he gets too easily fatigued to let him go back.  This year he should be the teenager who is nervous about entering into high school.  I should be worrying about why he is late for his curfew and having to filter phone calls from his friends.  


He knows what Friedreich's Ataxia is and he can see the affects of it on his body.  He's tired of seeing doctors but we make sure he sees them regularly for check ups.  I love him and wish they had some magic pill to make the FA go away and to give him back all that he has lost.  I'd give anything for that.

School is approaching soon which means there needs to be a few calls made to get things started for Kody.  He doesn't make much use of his legs anymore.  And he has to be reminded to be careful so he doesn't fall when transferring.  He has become a typical teenager when it comes to attitude and demeanor.  Talking back and being sarcastic has become a daily thing for him.  I have rearranged his room a few times to make it accommodating for him but I do think it will have to be changed around again because the current arrangement may not be working out like I thought it would.  He and Rikki daily either can't stand each other or are inseparable.  But as long as they are not arguing then things are okay.  
 

MDA Clinic Appointment

Today was a clinic appointment and a wheelchair appointment @ St. Joseph's Hospital in Tampa.  It's been about 8 months since the last clinic appointment and we seen a different doctor this time which was alright.  He seems to be on the same wave length as us on how things go.  Initially I thought we would be able to get a new set of wheelchairs because that's what we got in NC but that wasn't the case.  So given the option we opted to get a new electric chair and he chose to get a blue one which was cool.  There will be a couple trips back to the hospital to get fitted for a silhouette made for his chair which will provide more stability and give Kody the ability to not have to worry so much about holding his trunk up.  Also got the note from the physician about his schooling situation.  Now I just have to get a hold of someone to make an appointment for the registration.  Okay so I left a message and they are suppose to contact me back.  

Kody is now 5ft tall and 71 pounds.  That's a 4 pound gain since May 28th.  That's not too bad of a change.  The clinic weighed his wheelchair while he was out of it and then subtracted the weight of the chair from the weight with him sitting in it.  

We will see the clinic again next January for a visit.  His next appointment isn't until November for the cardiologist. 

As Kody's father and I talked over dinner on Saturday he made me notice something I haven't until that point.  Kody seems to have stabilized medically.  Wil pointed out how things haven't seemed to changed over the last while.  He remarked that maybe the prediction that was made about this coming October may not come to be true considering how things seem right now.  

Kody sees the MDA doctor this coming Monday.  He actually had an appointment scheduled today for the Orthopedic doctor but missed it.  I'm not completely frustrated about missing it though because it's only for observation purposes anyways.  With the current status of his heart surgery of any kind isn't an option because the risk of fatality outweighs any sort of benefits that would normally come from things.  

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.  

Kody is definitely having a voice change thing going on right now.  The big plus to that is it is making it easier to understand what he is saying for the most part.  Volume control is the downside but we can manage with that.  He will be doing virtual schooling as of next year which I still have to fill out the applications for.  This week I can work on that getting finished and sent to where it has to go.  If he had his way he wouldn't bother with school.  But then again what teenager wants to deal with school if given the choice?  Yea okay so there are a few rare ones like Nisa who took classes during the summer virtually.  But those types of students tend to be rare.  (Not a bad thing but I guess I was making a point or something with that.)  Who knows?  My blogs tend to ramble on sometimes and then circle back around to come to the conclusion.  The picture randomly tossed in there is a picture from camp.  He's chilling in the pool with his counselor Justin.  I might invest in some of those flotation devices once we have our house and the pool.  Currently there is a donation button posted on the sidebar of this blog and my other one ( www.lisachampagne-miner.blogspot.com    

I have spent the better part of 2 years doing what can be done to get it out there.  The purpose of the donation button is to put them along with any savings to purchase a home here in Riverview Florida.  Anyone is welcome to email me and ask whatever comes to mind about things.  I'm not sure if I have ever put that out there like that so here is the email: midnightmoet@gmail.com

Anywho where was I going with this?  Oh yea updates on our son.  Emotionally he seems to be doing fine though he has his temper when he wants to.  But hey what teenager doesn't right?  Medically he is managing.  We have a clinic appointment with the MDA and also to be fitted for another new chair.  Plans are to get both a manual and an electric.  That way if one has issues we have ........ BACK UP.  Thankfully we did that last time because the electric chair gave us problems from almost the beginning.  Who knows why though? 


Time for chatting is through.  Partly because mom is headed back to the virtual job hunt.  Yes yes I am now a Patient Care Technician looking for gainful employment.  Any takers?  Email me.  I live in Riverview (Tampa Bay Area.)

CAMP IS OVER

Tomorrow morning we go get Kody from camp.  (The video above is a newscast done yesterday in which Kody is in.)  I can't wait until he can tell us about everything he did while he had his time away.  There are some pictures posted on Facebook but just waiting for the link to be able to see them.  I will post some new pictures with him as soon as I have some from the site.  But for now this will be short and sweet.

MDA CAMP 2010

Tomorrow Kody starts his week away at camp.  His camp dates are 6/27-7/2.  He is pretty excited about being able to go.  This year his dad will be taking him and dropping him off because I have an 8 hour externship to attend.  Bummed?  A little.  But I packed his bags and have everything together.  He will get to hang out with other teenagers and just goof off so that will be good.  And he will only be right up the street from the place I start externship with this Monday. 

As I type this blog Kody is back on his PS3 for the first time in about 3 days.  The service was out and so he was being social with the rest of the family for the time.  He has become sarcastic over the last couple of months.  Sometimes it's funny but sometimes he goes over the top.  Camp for him starts next weekend on Sunday which means I am going to have to get together this week to put together his bags and such.  Yes I know it shouldn't be put off to the last minute but it won't be.  Tomorrow I  will empty a suitcase to put his things into.  I have to remember to get together some pillowcases and sheets.  And oh I can't forget his bathing suit though I am not real sure he will even decide to put it on.  Who knows?  He is excited about it though and I am excited for him.  Also excited that he will only be about 20 minutes away from home so if there were any emergency we are not that far away.  Either tomorrow or today I will stop by Walgreens to pick up his Lasix.  That way he has the medication with him.

Today is officially the last day of school for Kody and his sisters.  He was glad to hear that.  I am thinking that I might sign him up for a summer class online so that it will give him something to focus on.  Of course he thinks this is a bad idea and that it's stupid.  Typical reaction from a teenager who loathes school.  I was talking to him yesterday and he was like "When are you ever going to be home?"  Now I countered that with "When will you ever come out of your room?"  You see I have been doing an externship and trying to complete the hours asap.  So last night after coming home and showering I spent some time just conversing with him.  He has become a real ham as of lately.  Earlier in the day yesterday he scooted out of his room to find Nisa in the Triangle yoga position.  Being the jester that he is he proceeds to grab her ankle and pull which means that she fell on him.  Thankfully no major damage because she fell on him. He wanted her to be in trouble but I had to explain that it wasn't her fault he had basically tripped her.

Emotionally our son is doing good.  He is interacting with us and his sisters.  Yesterday I spent some time explaining to him the importance of stretching out his legs and moving them around.  I kind of nicknamed him SpiderMan .... because he likes to stay curled up like a spider.  Well with that said then I have to explain that he has had some edema and if he doesn't stretch his legs out then the circulation isn't so great.  Working to do what we can for him even if its only a limited amount of things .. you know?  

Halter Monitor Results .....

I received the call from the Cardiologist clinic this morning.  Results from his halter monitor turned out alright.  The nurse also informed me that the health form for MDA Camp was turned in.  Both good news.  

He has been on the Lasix now for over a month and it seems to be keeping the edema at bay.  Thankfully he doesn't have an issue with taking the medication anymore.  The first few times it caused his feet to spasm which hurt.  He still has some swelling but nothing overly concerning.  Doctors tell me just to keep an eye out since I noticed the edema to begin with.  Getting him on a scale is damn near impossible because he doesn't do well standing at all much less with assistance.  

Monday is his last day of homebound for his eighth grade school year.  I am going to have to talk to his teacher about what comes next.  There was mention of doing virtual schooling due to the courses with high school.  I have been trying to research the ins and outs of that type of program.  I'm not sure how that is going to go.  Then there is the thought of needing to get a new desktop computer for all that since the one we currently have is on it's last legs.  I mean literally it will squeal like a pig with no real reason why.  Any ideas on that?

Time to go see if our night owl needs or wants anything. 

School Year Is Almost Over

Last day of school is June 10th which means that Kody doesn't think he will have to deal with anymore school.  Little does he know I am planning to sign him up for a class or two for the summer. Only thing is I have to plan around his camp attendance which is June 26th - July 2nd.  He is sort of excited about that.  More so about the food variety that they will have.  He is now taking the Lasix that was prescribed by the Cardiologist every other day.  I am trying to watch and keep note of things with the edema.  (Fluid retention)  

The halter monitor results haven't came back in yet.  Though when they do I may ask for a print out of the readings.  

This morning Kody managed to scare himself.  When he first got up he couldn't breathe and started crying.  How I know this happened is because he told me later on.  He has his own sleep schedule which means most times he tends to sleep away the morning time.  He is now taking his Lasix every other day which has kept down the edema to where it's only really noticeable by me.  That is in part because I am very observant when it comes to things with him.  Monday have to put a few things in the male for his cardiologist.  We haven't gotten a call from the office about his halter monitor as of yet.  But the nurse said it could take up to 2 weeks for the results to be in the doctors hands.  Once the results are in I will post what was said.  Until then I have to wait.

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Today is Kody's  14th birthday.  Going to extend things out and have the dinner he wants tonight as well as take him out to the movies & lunch on Saturday.  He is the strongest, wisest, and handsomest (is that a word?) little teenager ever.

Kody's birthday is this Wednesday.  He is going to be 14 years old and there is a couple of things that he wants and wants to do.  Plans are still in the ways to figure things out.  Kody has class this afternoon which should be fine.  He will awaken later on and work on the little bit of homework he has.  Hard to believe the school year is almost over for him.  He will be glad because he says school frustrates him.  Truth being he would prefer to be in class with other students and it frustrates him that he is unabled to.  He is a great student though with an amazing learning capacity.  I'm not sure people get that this disease doesn't take away from the mind but rather takes away from the body. 

The halter monitor results haven't came in but they should be soon. 

Got back from the Cardiologist appointment a little bit ago.  The doc did the EKG and echocardiogram which gave him a clearer picture of the heart.  I made sure to bring to his attention the edema (water retention) which is has been occurring for a couple months now.  So he asked if it was alright to put Lasix on board. Now he asks rather than assuming I am going along with everything and I am glad he respects that. Lasix is a diuretic and it will be given to him on an as needed basis. Also Kody came home with a Halter monitor for the next 24 hours.  This will give him a better idea of how Kody's daily activities are.  I will update more when the results of that come back.

Tomorrow .....

Tomorrow is Kody's first echocardiogram in 6 months.  Should I admit I am nervous of what it will find this time?  Okay so I just admitted that.  His appointment is at 1pm which means we leave out before then because it takes time to get to the hospital.  This time Will stays behind because there are things to do at home.  Kody asked what appointment it was and I said Cardiology and he was like "Oh the one for my heart."  When I mention the appointment to Will he was like "This is the biggie which gives us more information and gives us a better outlook."  I weigh things that go on ... the known and unknown ... but sometimes with this disease I don't know what is worse.  Do you want a time table or do you want to not expect things?  He is tired of being sick and tired of being restricted.  What brightens the time he is interacting with me is his smile.  No matter what is said and done he smiles a lot.  Sometimes I wonder what is going on in his head and what are the things he chooses not to disclose. 

I am sitting here observing while Kody is doing his home bound session. After the IEP meeting at the end of this year we will enroll Kody into a virtual florida course over the summer to get him use to the system. Can't believe he is going to be 14 years old soon and a Freshman this fall. We got his report card today and he has 4 A's & 3 B's. Honor roll even now. Next week he only has the Cardiology appointment because the Pulmonary rescheduled for May 6th. Since the Pulmonary appointment is just a follow up to the test that he had a few months back, the rescheduling isn't a huge issue with me. When we do go for the cardiology appointment we will get two things taken care of. (The MDA camp physical form and the form for the handicapped sticker for the car.) You have no idea how difficult it is to find parking here when you don't have the proper sticker and actually need it.

We got through his homework at a decent pace today. But I did inform him and fill in dad about a bedtime schedule. Just am deciding to put a time in place that he needs to be in bed by. He was bummed about it and asked if it was in place on vacations and such. My response ... we will figure that out as it comes.

I will give a full update after his doctors appointment. The appointment is on the 28th.

Spring Break 2010 (April)

We took the kids on vacation this past week. At the time we had thought Kody wouldn't be able to go on any of the rides but that wasn't the case. At Sea World there was a ride called Journey to Atlantis which he LOVED. (Pictured here on the blog.) Also we took him on a helicopter simulation which was pretty cool. We gave him the option to pick out where we had dinner the first night and to no surprise he wanted AppleBees. Another thing he found cool was that our suite had a living room area which meant that he could sleep on the couch and watch television. Our first day was spent at the Florida Mall and with Kody's allowance he bought a new video game as well as a $20 PSN card for his system. He said the only sad thing was he couldn't play it until we went home. We hit Sea World the second day which is when Kody was able to hit the rides with us. The last day there we hit Ripley's Museum and got a few good pictures which we have to upload from our video camera once the disk is finalized. Kody got a picture inside of the bigg tire and then he went in the love chair that said he was WILD. After Ripleys we hit a go kart place which was I think his favorite part. Kody rode with dad in one car and Rikki rode with me in the other car while Nisa got to drive alone. The first track Nisa drove like a turtle at first which Kody found funny. And the second track Rikki and I sped past Wil & Kody TWICE ... the last lap around they blocked our lane so we couldn't finish first. MEN!! My men are competitive as heck.

Kody has school later on today but for now he is fast asleep. He actually is on is bed right now opposed to falling asleep on the floor. Every morning its a gamble of where he is sleeping at in his room. I've even walked into his room and not seen him anywhere ... only to find him fast asleep under his bed. Mapped out his homework this morning for him to do things later. This time around his homework is history and science so he won't mind doing it. His sore subject is math the moment. That's no surprise since it's my sore subject too. He has been irritable lately which isn't his demeanor at all. Also he has become pickier about his foods. Now to other people they would be like "Oh it's a phase and blah blah blah." But with Kody 's appetite has always been HUGE. So for now just going to monitor it and take it from there.

Was sitting here reading some emails from a few friends from a parent group. I didn't realize exactly how different the muscle structures for someone affected by FRDA compared to a normal genetic make-up .... whatever the hell normal is. We are given diagnosis that best fit what's going on when really the doctors are still scratching their heads about this disorder. Crazy to think this disorder is so very rare but I am connected via email & internet to hundreds of parents of kids with FRDA. Yes I said hundreds.

Kody was being irritable yesterday. He woke up at maybe 12:30pm and his face seemed a bit fuller. Yes that means it was puffy. Mental note to let the cardiologist know of this when we go on the 28th of this month. His eat habits are getting more and more finicky. He ended up having pizza rolls for lunch which is not what I expected. Especially since he has been on this chicken nugget kick for a while but hey as long as he ate something that's all that matters really. Then dinner time comes along and I make meatloaf in which he asked me to make sure it wasn't dry. (Only dry meatloaf I have made was the turkey loaf which they liked.) Okay so I made dinner and served up plates and he won't eat it. The only thing he would eat was the mashed potatoes I made as a side.

On the upside he reconnected with some friends from his old middle school. I asked him if he would like me to search up a few names from the book of names and emails he had from the going away party and he said yes. Hopefully that gives him an outside connection with people he knew before the homebound began. What I would give to have him back in a regular classroom ... yes even if that meant working extra hard to wake him up and get him ready for the day. He told me last night that he doesn't want to do the high school portion of school. I ended up telling him that he can't quit because he doesn't like the route in which schooling will be done. You see he has to switch to teleclasses because of it being high school curriculum which means 1:1 wouldn't cover everything. We will approach things as they come though. Right now he is still in bed.

Turned in his camp application which hopefully will mean he has a week away at camp this summer. This would be an opportunity for him to not only be around other kids but also be able to do other things that he can't right now. I am going to email the coordinator for the MDA and see if we can get something in the works for a new manual and electric wheelchair for him. The ones he has right now just need replacing.

Last night talking to my brother about the kids.  He asked me if Kody is always so winded when he talks.  I wasn't sure if he would notice it but I guess he did.  Ran down explaining whats going on with Kody.  Explaining how his heart no longer relaxes inbetween beats like it should.  Then going on to explain that its like his heart is always in workout mode which is why he isn't able to keep on any real weigh and has gone from 85 lbs in 2007 to about 64 lbs now.  That weight is actually up because he had gotten down to 56 lbs for a little while.  I'm not sure how Rick would react at first if he seen him right now since it's been a long while since last time he did see him. 

Working on getting Kody's MDA camp application put in place because somehow I didn't get the original one ( I think) and so having to put it together now.  I am going to do that soon. 

This week goes back to the same routine for Kody.  No more state testing so regular schedules as well as homework.  He has had some issues here and there this week that are better as of right now.  He ran a fever on and off over the weekend.  Then had to modify our kitchen table because his legs spasm up and he knocks his knee under the table.

FCAT Almost Complete

State testing is almost finished.  This is a little different compared to last year when we were in NC.  You see NC exempted Kody from state testing due to things going on with him.  Though it is taking him longer this time to actually do the testing I do think this is good for him.  They have paired him with a good teacher whom is kind as well as patient.  

Last night Kody asked me to get him some DOC (downloadable online content) for his PS3.  We do what we can for him as well as the girls.  So yes the DOC wasn't much so the purchase went through.  

He was due to have a dental appointment this Friday but with all the flu-like things coming through the house it's best to postpone things rather than risking him getting sick.  

Been managing with things as they come with him.  He is so much more intelligent than people thinks he is.  The disease masks the real him.  Anyone who has come in contact with him can never go on first impressions.  At first he is very shy but that's not how things remain.  His speech is slurred so it takes time for things to be understood sometimes.  This tends to frustrate him so sometimes he isn't so quick to repeat.  

Just A Random Update

Kody is part way through his state testing and feeling good about it.  He did say the math was a little harder than what he thought it would be but he's pulling through.  It has been nice to be appointment free for a little while.  Though he is due next month to be seen by the Cardiologist.  Hmmm what was the date for that again? It's on the 28th of April.  

This weekend is going well for him and he finds it funny that he stays up an extra hour tonight.  We haven't yet received his MDA camp application but that should be coming sometime soon.  Maybe I will email the coordinator sometime this week to bring that us.  He says he is excited about going though which is good because it will give him time to be away & do some things that he can't without the extra assistance.  He also says its a big plus that they bring in all kinds of foods and he can eat whenever, where ever.    

FCAT testing started today.  He seems to be handling that well.  Having to remind him to pay attention but not as often.  Also having to remind him to wear his seatbeat when he is in his wheelchair.  But that's nothing new.  No new news as far as his health goes is a good thing. 

Found a new way to cut his hair today.  You see he likes to have it shaved off but having him balance in a chair is becoming more and more difficult to do.  So today before his bath I laid out a towel and had him lay on it.  Then sat on the floor next to him and began cutting his hair.  He seemed to prefer this rather then trying to balance out. 

As I sit here listening to the monitor in his room I wonder "Why didn't I buy walkie talkies??"  He seems to be doing alright so far today.  Managed to sleep in until lunch time then eat what has seemed to become his favorite lunch.  CHICKEN NUGGETS.  Okay so we made sure they are as healthy as possible so they are white meat and not fried.  Now if he could get away with it he would drink lemonade every single day but we try to get in water and an ensure shake so that it balances out.  

Schooling went fine on Monday just a matter of sitting down to do his homework which we will more than likely do tomorrow.  Yes he has school tomorrow and it would be more logical to get it done today but that's not how we do things.  Just have to remember where we put the sheet that gives what homework he has.  

We have a schedule Cardiology visit coming up in April that will be including an echocardiogram (ultrasound of the heart) and an electrocardiogram (EKG: electric reading of the heart).  Yesterday took a stethoscope that is from my school to listen to his heart.  His sister had been trying to let her listen to his and he wouldn't allow it.  (Being a stubborn big brother.)  So I went to listen and the first thing noticed is I can visually see the lower portion of his heart pumping .... it protrudes thru the intercostal space (between the ribs) enough for it to be visually noticed without effort.  Then listening to it the swish sound between beats is very easy to hear.  Before you had to really listen to hear it but now it is just there.

He is making a list of things he wants for his birthday and so far this is what he has come up with:
1) PSN card to make purchases from the Playstation Online Store
2) Game stop gift card so he can purchase more games

 .... okay can we tell what he loves??  Such a lil gamer.  Okay not so lil anymore .. he's a teenager.

3) Gift card to go out either to dinner or shopping

I think that covers his list for now but I have no doubt more will be added on.  Just about his lunch time so time to get things together

OMG He's A Teenager Now ..

Between working on the 2 blogs I have open and the group opened in honor of Kody as well as keeping up with a few other pages .... its a juggling act.  But he's worth it.  His current first love is his PS3.  Thankfully this morning his speech is better.  Yesterday it took asking several times for us to understand what he was saying.  Has also talked about his legs not working even alittle bit anymore.  Both of which are progressions of the FA.  Is it sad ... yes.  But we have to cope with things as they come because honestly we have no other choice.  Does that mean we are giving up?  No it doesn't.  It means we are modifying things as they come.  Have seen a few houses for sale within our neighborhood that if things were in check already we would be looking into.  Starting to put together a list soon of needs and anticipated needs of the home we will buy.  Called to make his cardiology appointment this morning for April.  Thankfully there was a April schedule already available.  This time around he will have an EKG (electrocardiogram: electric record of the heart) and an echocardiogram (ultrasound of the heart) to determine the status of things.  Making sure to bring the last halter monitor results with me he had done.  They are from back in Sept of 2008 but wanting to see what his current doctor says about the results.  Knowing what I do about the ekg results it shows there were issues where the doctor who had it done said that it was fine. 

One word of advice would be to make sure to always get a copy of your child's medical chart.  Working on putting a full chart together for all of the kids now.  I have most of the stuff for Kody but not everything. 

Making Good On A Promise

We are looking  to find handicap accessible housing that will meet Kody's needs as well as the rest of the family.   We have been advised by family to apply for Extreme Home Makeover, but we don't own a house or land so can't even apply.  Now if the EHM team would be able to just start from scratch here in Riverview, FL we would be quick to apply. Anyone  who knows our story is sure that we are deserving but figuring out how to even purchase something is a huge, almost insurmountable, obstacle before we could even apply. I personally don't have the means to get financing at this point, especially  income being so as it has been.  Thankfully we do have Kody's benefits coming thru so I have been able to be at home with him.  Thankfully my husband is here to watch our son and our daugters so I can attend school on the weekends to get my Patient Care Technician's certification. Goal being to ensure one of the parentals are in the home with our kids rather than being dependant upon others for caring for all 3 of the kids.  Kody's care to us has become very routine but to outside people wouldn't come so easily. We cherish the basic daily things with our children and their lives.
So, if you know of a resource that might be able to help us with the first step, just getting some land or a house here in the Riverview, FL (Hillsborough County) so that we can stay close to his medical and school team, please let me know or contact them with our story. I'm open and willing to any ideas or suggestions. I believe that there are angels out there with the resources Kody needs  to have all the care and compassion he deserves while he is still with us and able to enjoy life. Sometimes it just takes the right connection, or series of connections, to put miracle workers in touch with the little ones that need them.  Life is a blessing and looking to make good on a promise for our children ...... something permanent to make memories in.  Thanks for taking time to read this and bless you all!!!






Thanks A Bunch!!
   LLM

For Kody

Have you noticed a donation button to the right of the blog posts? This is an easy and fast way for you to help with Kody's needs! This account has been set-up to use for experiences and such.



This is also a savings place towards a handicap accessible house for Kody in the next year or so. The house we have now is manageable for him but to have a place in which we can make some lasting memories & the adjustments that will be needed isn't possible here, since we rent. We are trying to pull it together within the next year for him.  A promise to be kept is getting the home that we have been telling him we would get for a couple of years now. 


So, if all you can do is donate a little, every little bit helps!

Thanks from the bottom of our hearts!!
LLM

What Is Friedreich's Ataxia?

WHAT IS FRIEDREICH'S ATAXIA??


DESCRIPTION:

Friedreich's ataxia (FRDA, FA) is a rare, genetic, neuromuscular, degerative, multi-system, life-shortening disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later. (This all depends on a host of factors.) The course of the disorder is progressive; gets more severe over time. Most young people diagnosed with FRDA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.




SYMPTOMS (varies with each affected person)
~ muscle weakness and loss of coordination (ataxia) in the arms and legs

~ vision impairment

~ hearing loss (sometimes called sensoneuro hearing impairment)

~ slurred speech

~ aggressive scoliosis (curvature of the spine)

~ diabetes mellitus or carbohydrate intolerance

~ a serious heart condition (enlarged heart — hypertrophic cardiomyopathy)

These symptoms reflect the death of cells in certain parts of the nervous system. The mental capabilities of people coping with Friedreich's ataxia, however, remain completely intact. (So take a moment to realize that before adjusting how you talk and react to FAer's) For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early twenties, depending on rate of progression. Many require surgery for their scoliosis. There are currently no treatments or cures.

Introduction to Kody

Who is Kody? Kody is our son.  He was born at 2:17am on May 5th, 1996 in Dearborn Michigan.  From the very beginning he was always in a hurry to do what he had to do.  He was born 5 weeks and 5 days premature at a whole 5lbs & 11 oz & 19 inches long. 

He is now 13 years old and a true definition of a joker.  Definitely tends to be all into his PS3 & its awesomeness. 

Most people who first meet Kody don't see this amazing little man with so much personality & strength.  Instead they see his disability.  He is 7 years into his diagnosis of Friedreich's Ataxia as of this coming July.  This blog will focus completely on him.  Figuring why not put our son's face out there and get him known .... while also educating whomever who will read about the FA that has came into our lives. 

Amazingly enough no matter what this disorder has thrown at him he has remained very upbeat and pretty amazing.  Due to a secondary condition caused by the FA he is now on his second year of homebound.  Carrying a full 8th grade course load with some modifications to adapt to the loss of fine motor skills and fatigue factors.  This card marking he made the honor roll.  CONGRATS TO HIM.