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