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.