In Mere Months

Our son will be 18 years old.  He will have made it two years longer than the cardiologist in North Carolina had thought he would.  It is amazing how things are.  Yes neither of us like the Friedreich's Ataxia but we are managing.  Does it get frustrating?  Hell yes it does.  It makes me angry that our son has been handed such a burden to carry throughout his life.  I find myself imagining what he would be like if he was not affected by FA.  He's handsome so no doubt he would be in a relationship with some girl.  This is his junior year of high school and he would be deciding on a college.  Or driving us crazy saying he was going to go find himself before deciding on a college .He does his best to keep up academically though sometimes he grows frustrated.  We tried to detour him from taking chemistry because we thought it would be too tough of a subject.  It should not surprise me that he is passing the class with flying colors.  I am going to invite Rikki to be an author of the the blog .... Would be great to have us both inputting on it.

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

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.

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.  

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. 

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.