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.

Spring Break 2010 (April)

We took the kids on vacation this past week. At the time we had thought Kody wouldn't be able to go on any of the rides but that wasn't the case. At Sea World there was a ride called Journey to Atlantis which he LOVED. (Pictured here on the blog.) Also we took him on a helicopter simulation which was pretty cool. We gave him the option to pick out where we had dinner the first night and to no surprise he wanted AppleBees. Another thing he found cool was that our suite had a living room area which meant that he could sleep on the couch and watch television. Our first day was spent at the Florida Mall and with Kody's allowance he bought a new video game as well as a $20 PSN card for his system. He said the only sad thing was he couldn't play it until we went home. We hit Sea World the second day which is when Kody was able to hit the rides with us. The last day there we hit Ripley's Museum and got a few good pictures which we have to upload from our video camera once the disk is finalized. Kody got a picture inside of the bigg tire and then he went in the love chair that said he was WILD. After Ripleys we hit a go kart place which was I think his favorite part. Kody rode with dad in one car and Rikki rode with me in the other car while Nisa got to drive alone. The first track Nisa drove like a turtle at first which Kody found funny. And the second track Rikki and I sped past Wil & Kody TWICE ... the last lap around they blocked our lane so we couldn't finish first. MEN!! My men are competitive as heck.

Kody has school later on today but for now he is fast asleep. He actually is on is bed right now opposed to falling asleep on the floor. Every morning its a gamble of where he is sleeping at in his room. I've even walked into his room and not seen him anywhere ... only to find him fast asleep under his bed. Mapped out his homework this morning for him to do things later. This time around his homework is history and science so he won't mind doing it. His sore subject is math the moment. That's no surprise since it's my sore subject too. He has been irritable lately which isn't his demeanor at all. Also he has become pickier about his foods. Now to other people they would be like "Oh it's a phase and blah blah blah." But with Kody 's appetite has always been HUGE. So for now just going to monitor it and take it from there.

Was sitting here reading some emails from a few friends from a parent group. I didn't realize exactly how different the muscle structures for someone affected by FRDA compared to a normal genetic make-up .... whatever the hell normal is. We are given diagnosis that best fit what's going on when really the doctors are still scratching their heads about this disorder. Crazy to think this disorder is so very rare but I am connected via email & internet to hundreds of parents of kids with FRDA. Yes I said hundreds.

Kody was being irritable yesterday. He woke up at maybe 12:30pm and his face seemed a bit fuller. Yes that means it was puffy. Mental note to let the cardiologist know of this when we go on the 28th of this month. His eat habits are getting more and more finicky. He ended up having pizza rolls for lunch which is not what I expected. Especially since he has been on this chicken nugget kick for a while but hey as long as he ate something that's all that matters really. Then dinner time comes along and I make meatloaf in which he asked me to make sure it wasn't dry. (Only dry meatloaf I have made was the turkey loaf which they liked.) Okay so I made dinner and served up plates and he won't eat it. The only thing he would eat was the mashed potatoes I made as a side.

On the upside he reconnected with some friends from his old middle school. I asked him if he would like me to search up a few names from the book of names and emails he had from the going away party and he said yes. Hopefully that gives him an outside connection with people he knew before the homebound began. What I would give to have him back in a regular classroom ... yes even if that meant working extra hard to wake him up and get him ready for the day. He told me last night that he doesn't want to do the high school portion of school. I ended up telling him that he can't quit because he doesn't like the route in which schooling will be done. You see he has to switch to teleclasses because of it being high school curriculum which means 1:1 wouldn't cover everything. We will approach things as they come though. Right now he is still in bed.

Turned in his camp application which hopefully will mean he has a week away at camp this summer. This would be an opportunity for him to not only be around other kids but also be able to do other things that he can't right now. I am going to email the coordinator for the MDA and see if we can get something in the works for a new manual and electric wheelchair for him. The ones he has right now just need replacing.