Establishing a Cardiologist In Atlanta

We had an appointment this past Thursday with Sibley's Cardiology in Atlanta.  The appointment was only two hours long which was not bad for an establishing appointment.  The doctor asked us to bring him back in three months to be seen by the doctors who specialize specifically in Hypertrophic Cardiomyopathy.  First impressions of the doctor and the clinic is that we liked them.  Kody was included in conversation and treated with respect.  Of course he liked all the pretty nurse techs.  The doctor came into the room where he had the echo done and explained everything he was seeing on the screen and asked if we had any questions.  At this point his heart has not gotten better but not gotten worse in comparison with the notes from the last appointment in April.  They have not yet reviewed his full chart because it had not been received by the clinic.  It had to be sent via snail mail because of the amount of information.  

Summary of report:

*Mitral valve regurgitation is present and is mild. This means the valve between the upper and lower chamber of the heart on the left side does not close properly so the blood being pumped out trickles back into the bottom chamber.  

*The right portion of the mitral valve when opening has a tendency to suck up to the right side of the wall.

* Thickness of the heart muscle is such that though it is pumping efficiently the walls touch when the chambers fully contract.

I made mention of the aorta narrowing but did not ask about it when he had the sonogram screen in front of me.  

I will call on Tuesday to make the appointment for three months from now.  Because of the HCM he has to be seen on a Monday and at the clinic in Atlanta verses their location in Marietta which is closer to us.

I set up an appointment for 8/26 @ the new cardiology clinic in Atlanta.  The plan was for Kody to go to Sibley Cardiology in Marietta GA BUT when I called to make the appointment I was told he has to be seen at this other place because they SPECIALIZE in HCM.  Yes, this is the first time ever we have dealt with someone who specializes in Kody's heart condition.  Yesterday I had to fax the request for the old clinic to send ALL of his records to the new clinic.  This should be interesting.  Will update at a later date.

Camp Pictures

I have put together a "story book" of some camp photos from Kody's final year at MDA camp.  Click on the photographs below to be able to view all the pictures.  He had a blast and they really did love the heck out of him.... was sad to close that chapter of his life.  

Day 2 At Rotary Camp ..... in Brandon, Florida

In these pictures Kody seems to be in a contest ... I thought it was drinking liquid but apparently he is trying to suck jelly through a straw.  I would not be surprised if he managed to get it done ..... lol ... go Kody. 

The Special Mother by Erma Bombeck

The Special Mother 

by Erma Bombeck 

Did you ever wonder how mothers of disabled children were chosen? 

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. 

"This one gets a daughter. The Patron saint will be Cecelia" 

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice"

MDA Camp

On Monday we took Kody for a visit with the MDA doctor to get his physical and clearance for camp.  I had to make sure to bring the clearance from his cardiologist.  He is excited about going to camp this year and this will be his last year since he is 17 now and the age max 17.  The doctor was quite impressed with the strength level he has in his extremities.  It just confirms what we do for him is working in some respects.  He is not babied but rather left to do as much as he can.  He tires easily but does manage to do some of the essentials by himself.  He can bathe and transfer to the toilet on his own but sometimes needs help if he missteps.  For his bath we run his water and put his poofy and soap within his reach.  I am proud of him for not complaining about what he does not have or is not able to do .. but rather does whatever he can do on his own with pride.  

His halter monitor came up as the doctor expected it to.  He is still medication free and that is what works for him.  Life is life for him and he does not complain about much except when I interrupt his gaming time.  

FRDA has altered how his life is going but has not taken away the essence of what makes him .. him.

You Keep Surprising Me

17 years ago today I was scare of the outcome of giving birth to Kody.  He had been trying to be born since I was 28 week pregnant and here it was 5 weeks and 5 days until my due date and my water broke.  You would think he was in a real hurry for something and that he would have been born quickly but he waited almost a full 24 hours before making his entrance into the world.  Thank God for epidurals!  There was a time when I did not think he would be with us at this point in his life.  Doctors have given us timelines due to the FRDA and he has lived past them all.  So I guess doctors are not always correct and they are just giving an educated estimation.

Yesterday Will took the kids to see Iron Man 3 and to have an early dinner at Applebees.  Unfortunately I was unable to attend due to an injury.  Kody was upset with me for not coming but later on after he and I chatted he understood why.  

Happy Birthday Kody!!