Kody has an appointment the 26th to see the MDA clinic and to see the wheelchair specialist.  This means that he will be getting fitted for new wheelchairs.  He will need a manual for some things and an electric for others.  At this appointment I will have to get the letter to enroll him in school.  The verification is to get his home bound services.  Once that is obtain then I have to enroll him in the high school then get transferred to the home bound program.  Which means that the high school will probably be fed up with paperwork by the time they are through with Kody's case but it will get handled.  He would love nothing more than to return to the 'normal' school setting and I would love nothing more than allowing him to but health doesn't warrant that.  Not to mention he would be overwhelmed if put back into the setting.  Just simply being at the pool surrounded by his able body peers would be hard and he would insist on leaving.  

The Lasix every other day has seemed to keep down the edema which has been good.  In a couple of months I will be calling the Cardiology office to set up for another appointment.  He isn't due to see that doctor again until November.  He had been seeing the cardiologist every 2-3 months but both the doctor and I felt comfortable with honoring Kody's wishes to be seen only once every 6 months.  Insurance only allows for an echocardiogram once every 6 months so the other appointments were only basic assessment and an EKG.

Once he has the new electric chair he may want to get out of the house more often.  Though he has became sensitive to the bright light outside so may also invest in some new sunglasses.  

Kody is definitely having a voice change thing going on right now.  The big plus to that is it is making it easier to understand what he is saying for the most part.  Volume control is the downside but we can manage with that.  He will be doing virtual schooling as of next year which I still have to fill out the applications for.  This week I can work on that getting finished and sent to where it has to go.  If he had his way he wouldn't bother with school.  But then again what teenager wants to deal with school if given the choice?  Yea okay so there are a few rare ones like Nisa who took classes during the summer virtually.  But those types of students tend to be rare.  (Not a bad thing but I guess I was making a point or something with that.)  Who knows?  My blogs tend to ramble on sometimes and then circle back around to come to the conclusion.  The picture randomly tossed in there is a picture from camp.  He's chilling in the pool with his counselor Justin.  I might invest in some of those flotation devices once we have our house and the pool.  Currently there is a donation button posted on the sidebar of this blog and my other one ( www.lisachampagne-miner.blogspot.com    

I have spent the better part of 2 years doing what can be done to get it out there.  The purpose of the donation button is to put them along with any savings to purchase a home here in Riverview Florida.  Anyone is welcome to email me and ask whatever comes to mind about things.  I'm not sure if I have ever put that out there like that so here is the email: midnightmoet@gmail.com

Anywho where was I going with this?  Oh yea updates on our son.  Emotionally he seems to be doing fine though he has his temper when he wants to.  But hey what teenager doesn't right?  Medically he is managing.  We have a clinic appointment with the MDA and also to be fitted for another new chair.  Plans are to get both a manual and an electric.  That way if one has issues we have ........ BACK UP.  Thankfully we did that last time because the electric chair gave us problems from almost the beginning.  Who knows why though? 


Time for chatting is through.  Partly because mom is headed back to the virtual job hunt.  Yes yes I am now a Patient Care Technician looking for gainful employment.  Any takers?  Email me.  I live in Riverview (Tampa Bay Area.)

CAMP IS OVER

Tomorrow morning we go get Kody from camp.  (The video above is a newscast done yesterday in which Kody is in.)  I can't wait until he can tell us about everything he did while he had his time away.  There are some pictures posted on Facebook but just waiting for the link to be able to see them.  I will post some new pictures with him as soon as I have some from the site.  But for now this will be short and sweet.

MDA CAMP 2010

Tomorrow Kody starts his week away at camp.  His camp dates are 6/27-7/2.  He is pretty excited about being able to go.  This year his dad will be taking him and dropping him off because I have an 8 hour externship to attend.  Bummed?  A little.  But I packed his bags and have everything together.  He will get to hang out with other teenagers and just goof off so that will be good.  And he will only be right up the street from the place I start externship with this Monday. 

As I type this blog Kody is back on his PS3 for the first time in about 3 days.  The service was out and so he was being social with the rest of the family for the time.  He has become sarcastic over the last couple of months.  Sometimes it's funny but sometimes he goes over the top.  Camp for him starts next weekend on Sunday which means I am going to have to get together this week to put together his bags and such.  Yes I know it shouldn't be put off to the last minute but it won't be.  Tomorrow I  will empty a suitcase to put his things into.  I have to remember to get together some pillowcases and sheets.  And oh I can't forget his bathing suit though I am not real sure he will even decide to put it on.  Who knows?  He is excited about it though and I am excited for him.  Also excited that he will only be about 20 minutes away from home so if there were any emergency we are not that far away.  Either tomorrow or today I will stop by Walgreens to pick up his Lasix.  That way he has the medication with him.

Today is officially the last day of school for Kody and his sisters.  He was glad to hear that.  I am thinking that I might sign him up for a summer class online so that it will give him something to focus on.  Of course he thinks this is a bad idea and that it's stupid.  Typical reaction from a teenager who loathes school.  I was talking to him yesterday and he was like "When are you ever going to be home?"  Now I countered that with "When will you ever come out of your room?"  You see I have been doing an externship and trying to complete the hours asap.  So last night after coming home and showering I spent some time just conversing with him.  He has become a real ham as of lately.  Earlier in the day yesterday he scooted out of his room to find Nisa in the Triangle yoga position.  Being the jester that he is he proceeds to grab her ankle and pull which means that she fell on him.  Thankfully no major damage because she fell on him. He wanted her to be in trouble but I had to explain that it wasn't her fault he had basically tripped her.

Emotionally our son is doing good.  He is interacting with us and his sisters.  Yesterday I spent some time explaining to him the importance of stretching out his legs and moving them around.  I kind of nicknamed him SpiderMan .... because he likes to stay curled up like a spider.  Well with that said then I have to explain that he has had some edema and if he doesn't stretch his legs out then the circulation isn't so great.  Working to do what we can for him even if its only a limited amount of things .. you know?  

Halter Monitor Results .....

I received the call from the Cardiologist clinic this morning.  Results from his halter monitor turned out alright.  The nurse also informed me that the health form for MDA Camp was turned in.  Both good news.  

He has been on the Lasix now for over a month and it seems to be keeping the edema at bay.  Thankfully he doesn't have an issue with taking the medication anymore.  The first few times it caused his feet to spasm which hurt.  He still has some swelling but nothing overly concerning.  Doctors tell me just to keep an eye out since I noticed the edema to begin with.  Getting him on a scale is damn near impossible because he doesn't do well standing at all much less with assistance.  

Monday is his last day of homebound for his eighth grade school year.  I am going to have to talk to his teacher about what comes next.  There was mention of doing virtual schooling due to the courses with high school.  I have been trying to research the ins and outs of that type of program.  I'm not sure how that is going to go.  Then there is the thought of needing to get a new desktop computer for all that since the one we currently have is on it's last legs.  I mean literally it will squeal like a pig with no real reason why.  Any ideas on that?

Time to go see if our night owl needs or wants anything.