Kody Update 1/2013

Kody updates

Kody had a spill earlier in the week and has some marks on his face.  He is doing good except for some minor edema today. He is anxiously waiting for Christmas so he can get into his gifts.   He wants the movie Ted and is excited at the prospects of new games.  He is doing well in school and spends most of the time getting along with Rikki.  Notice I said most of the time.  

At the end of January he has an appointment with the Pulmonologist and then I have to make the appointment for the Cardiologist.  The first appointment is to look into lung function and his ability to swallow without him aspirating.  

It amazes me how he handles his life ... and it is awe inspiring.  We are so proud of how he handles himself.  

Later on today I have to call and make two appointments for our teenager.  Yes I was tempted to put little man but he is not so little anymore.  The first appointment is for the Pulmonary Doctor which I am hoping can be at the main hospital we go to for everything for him.  It has been a little bit so calling will give me a better idea.  The second appointment is to see the Cardiologist.  Dr. McKenna said he would like to have him evaluated by the Pulmonary Doctor ... Dr Schnaef (?sp).  Oh I guess I should put that McKenna is his cardiologist and not just assume everyone knows who he is, right?  Sorry, had a mom moment.  It is becoming more noticeable the change in his muscle control in the neck region.  Yesterday my DH asked me why KC was bobbing his head while he was eating which is simply because he does not have the same head control he had a year ago.  I have to say I did notice the difference a few weeks ago but thought I was the only one who had noticed.  It is hard to see more of the progression and not really be able to fix things.  He is such a trooper though because he does not complain much about anything.  It may be too late by the time I get home to make the appointments so instead I may call in the morning.  Besides I have to look at the calendar to see when they have off school so the appointments do not impede on his classes.  He is doing so well in them.  

First 9 Weeks Progress / Report Card In

Report card in for the first 9 weeks and I have to say Kody has done quite well.  He probably would have gotten a better grade in Physical Science had he not had 7 days.  Why did he?  A few days were my fault because I dialed in the wrong teleclass number and a few days he ended up grounded because he somehow forgot to watch the time and missed class.  

Cardiology Appointment Updates

Kody has an appointment with Dr. McKenna this morning at 11am.  It has been six months since the last time he was seen and his heart condition has progressed.  The doctor said he noticed the heart isn't contracting like it should be as it had been doing before.  He said he would like us to take him to see the Pulmonary doctor and have his lung status evaluated.  There is come concern about aspiration that is not immediate but something to be addressed to see if there has been any change.  Also he made mention of how thin Kody is.  Anyone who knows Kody knows he eats like a horse.  He is thin because his heart is always on overdrive so it requires more of him.

I asked him a few tough question which he answered the best he could.  One of them being ... at the rate of progression of his heart, how much longer is it going to be able to function under the current stress it has on it.  He simply said it could be a little while but that he does not like to time stamp things.  

I was a bit anxious as we entered the hospital.  His doctor said he would like to see Kody back in three months instead of six.  

When Kody was asked if he had any questions for the doctor he smiled and said no.  Earlier in the day he told me he didn't have any questions but that he knew his heart was getting worse.  He then smirks and is like "That stuff just keeps sneaking up on me."  Then he face palmed.  

If you have any questions feel free to comment or email.  ((HUGS))

All About The Heart

Tomorrow at 11am we are going to be at the hospital with Kody for a Cardiology visit with Doc McKenna.  It has been six months since his last visit and so we are going for an EKG and a echocardiogram to find out how his heart is weathering the Friedreich's Ataxia wrath.  This particular appointment is what usually has me on edge.  Your heart is your heart and it is required to function properly.  I have noticed his breathing when he is talking has changed.  He is not able to say quite as much before having to recharge his breath.  

Kody started school this week.  How does he feel about it?  I think he has mixed feelings on it because though he does not mind his reading, he is not very big on science classes.  I wish he was well enough to be back in school.  He has such a bright and cheery demeanor that would do so well in a social environment, like school.  

He does well in the home setting though.  He has a family who loves and supports him.  ((HUGS))