School Year Is Almost Over

Last day of school is June 10th which means that Kody doesn't think he will have to deal with anymore school.  Little does he know I am planning to sign him up for a class or two for the summer. Only thing is I have to plan around his camp attendance which is June 26th - July 2nd.  He is sort of excited about that.  More so about the food variety that they will have.  He is now taking the Lasix that was prescribed by the Cardiologist every other day.  I am trying to watch and keep note of things with the edema.  (Fluid retention)  

The halter monitor results haven't came back in yet.  Though when they do I may ask for a print out of the readings.  

This morning Kody managed to scare himself.  When he first got up he couldn't breathe and started crying.  How I know this happened is because he told me later on.  He has his own sleep schedule which means most times he tends to sleep away the morning time.  He is now taking his Lasix every other day which has kept down the edema to where it's only really noticeable by me.  That is in part because I am very observant when it comes to things with him.  Monday have to put a few things in the male for his cardiologist.  We haven't gotten a call from the office about his halter monitor as of yet.  But the nurse said it could take up to 2 weeks for the results to be in the doctors hands.  Once the results are in I will post what was said.  Until then I have to wait.

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Today is Kody's  14th birthday.  Going to extend things out and have the dinner he wants tonight as well as take him out to the movies & lunch on Saturday.  He is the strongest, wisest, and handsomest (is that a word?) little teenager ever.

Kody's birthday is this Wednesday.  He is going to be 14 years old and there is a couple of things that he wants and wants to do.  Plans are still in the ways to figure things out.  Kody has class this afternoon which should be fine.  He will awaken later on and work on the little bit of homework he has.  Hard to believe the school year is almost over for him.  He will be glad because he says school frustrates him.  Truth being he would prefer to be in class with other students and it frustrates him that he is unabled to.  He is a great student though with an amazing learning capacity.  I'm not sure people get that this disease doesn't take away from the mind but rather takes away from the body. 

The halter monitor results haven't came in but they should be soon. 

Got back from the Cardiologist appointment a little bit ago.  The doc did the EKG and echocardiogram which gave him a clearer picture of the heart.  I made sure to bring to his attention the edema (water retention) which is has been occurring for a couple months now.  So he asked if it was alright to put Lasix on board. Now he asks rather than assuming I am going along with everything and I am glad he respects that. Lasix is a diuretic and it will be given to him on an as needed basis. Also Kody came home with a Halter monitor for the next 24 hours.  This will give him a better idea of how Kody's daily activities are.  I will update more when the results of that come back.

Tomorrow .....

Tomorrow is Kody's first echocardiogram in 6 months.  Should I admit I am nervous of what it will find this time?  Okay so I just admitted that.  His appointment is at 1pm which means we leave out before then because it takes time to get to the hospital.  This time Will stays behind because there are things to do at home.  Kody asked what appointment it was and I said Cardiology and he was like "Oh the one for my heart."  When I mention the appointment to Will he was like "This is the biggie which gives us more information and gives us a better outlook."  I weigh things that go on ... the known and unknown ... but sometimes with this disease I don't know what is worse.  Do you want a time table or do you want to not expect things?  He is tired of being sick and tired of being restricted.  What brightens the time he is interacting with me is his smile.  No matter what is said and done he smiles a lot.  Sometimes I wonder what is going on in his head and what are the things he chooses not to disclose. 

I am sitting here observing while Kody is doing his home bound session. After the IEP meeting at the end of this year we will enroll Kody into a virtual florida course over the summer to get him use to the system. Can't believe he is going to be 14 years old soon and a Freshman this fall. We got his report card today and he has 4 A's & 3 B's. Honor roll even now. Next week he only has the Cardiology appointment because the Pulmonary rescheduled for May 6th. Since the Pulmonary appointment is just a follow up to the test that he had a few months back, the rescheduling isn't a huge issue with me. When we do go for the cardiology appointment we will get two things taken care of. (The MDA camp physical form and the form for the handicapped sticker for the car.) You have no idea how difficult it is to find parking here when you don't have the proper sticker and actually need it.

We got through his homework at a decent pace today. But I did inform him and fill in dad about a bedtime schedule. Just am deciding to put a time in place that he needs to be in bed by. He was bummed about it and asked if it was in place on vacations and such. My response ... we will figure that out as it comes.

I will give a full update after his doctors appointment. The appointment is on the 28th.