Last night talking to my brother about the kids.  He asked me if Kody is always so winded when he talks.  I wasn't sure if he would notice it but I guess he did.  Ran down explaining whats going on with Kody.  Explaining how his heart no longer relaxes inbetween beats like it should.  Then going on to explain that its like his heart is always in workout mode which is why he isn't able to keep on any real weigh and has gone from 85 lbs in 2007 to about 64 lbs now.  That weight is actually up because he had gotten down to 56 lbs for a little while.  I'm not sure how Rick would react at first if he seen him right now since it's been a long while since last time he did see him. 

Working on getting Kody's MDA camp application put in place because somehow I didn't get the original one ( I think) and so having to put it together now.  I am going to do that soon. 

This week goes back to the same routine for Kody.  No more state testing so regular schedules as well as homework.  He has had some issues here and there this week that are better as of right now.  He ran a fever on and off over the weekend.  Then had to modify our kitchen table because his legs spasm up and he knocks his knee under the table.

FCAT Almost Complete

State testing is almost finished.  This is a little different compared to last year when we were in NC.  You see NC exempted Kody from state testing due to things going on with him.  Though it is taking him longer this time to actually do the testing I do think this is good for him.  They have paired him with a good teacher whom is kind as well as patient.  

Last night Kody asked me to get him some DOC (downloadable online content) for his PS3.  We do what we can for him as well as the girls.  So yes the DOC wasn't much so the purchase went through.  

He was due to have a dental appointment this Friday but with all the flu-like things coming through the house it's best to postpone things rather than risking him getting sick.  

Been managing with things as they come with him.  He is so much more intelligent than people thinks he is.  The disease masks the real him.  Anyone who has come in contact with him can never go on first impressions.  At first he is very shy but that's not how things remain.  His speech is slurred so it takes time for things to be understood sometimes.  This tends to frustrate him so sometimes he isn't so quick to repeat.  

Just A Random Update

Kody is part way through his state testing and feeling good about it.  He did say the math was a little harder than what he thought it would be but he's pulling through.  It has been nice to be appointment free for a little while.  Though he is due next month to be seen by the Cardiologist.  Hmmm what was the date for that again? It's on the 28th of April.  

This weekend is going well for him and he finds it funny that he stays up an extra hour tonight.  We haven't yet received his MDA camp application but that should be coming sometime soon.  Maybe I will email the coordinator sometime this week to bring that us.  He says he is excited about going though which is good because it will give him time to be away & do some things that he can't without the extra assistance.  He also says its a big plus that they bring in all kinds of foods and he can eat whenever, where ever.    

FCAT testing started today.  He seems to be handling that well.  Having to remind him to pay attention but not as often.  Also having to remind him to wear his seatbeat when he is in his wheelchair.  But that's nothing new.  No new news as far as his health goes is a good thing. 

Found a new way to cut his hair today.  You see he likes to have it shaved off but having him balance in a chair is becoming more and more difficult to do.  So today before his bath I laid out a towel and had him lay on it.  Then sat on the floor next to him and began cutting his hair.  He seemed to prefer this rather then trying to balance out. 

As I sit here listening to the monitor in his room I wonder "Why didn't I buy walkie talkies??"  He seems to be doing alright so far today.  Managed to sleep in until lunch time then eat what has seemed to become his favorite lunch.  CHICKEN NUGGETS.  Okay so we made sure they are as healthy as possible so they are white meat and not fried.  Now if he could get away with it he would drink lemonade every single day but we try to get in water and an ensure shake so that it balances out.  

Schooling went fine on Monday just a matter of sitting down to do his homework which we will more than likely do tomorrow.  Yes he has school tomorrow and it would be more logical to get it done today but that's not how we do things.  Just have to remember where we put the sheet that gives what homework he has.