Two Weeks Until Kody Turns 16!!

There was a time when I thought our son would not live to see his 16th birthday .... well here we are two weeks shy of it and he is seemingly stablized.  He is looking forward to camp in June which gives him time away from the securities of home and time with his peers.  His halter monitor showed what they expected .. it was not normal but it was not critically abnormal.  We are not doing the spinal fusion surgery but will be making an appointment with the Pulmonologist for this summer to get an evaluation of his lung capacity. 

He is doing great in school and his homebound teachers love him.  He has asked about going to an online academy which I will look into over the summer.  This would have him doing school completely online and he could turn in all work online as well.  He has talked about maybe taking online classes when he is done to be an online reading/english teacher when he is done with high school.  This was after he said his disability wouldn't make him able to be able to do classroom teaching or teleclass because his speech is so affected.  Time will tell though how things go and if he changes his mind.  We all know how teenagers are ...

((HUGS)) to our readers

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. 

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

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.

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.