MDA Clinic Appointment

Today was a clinic appointment and a wheelchair appointment @ St. Joseph's Hospital in Tampa.  It's been about 8 months since the last clinic appointment and we seen a different doctor this time which was alright.  He seems to be on the same wave length as us on how things go.  Initially I thought we would be able to get a new set of wheelchairs because that's what we got in NC but that wasn't the case.  So given the option we opted to get a new electric chair and he chose to get a blue one which was cool.  There will be a couple trips back to the hospital to get fitted for a silhouette made for his chair which will provide more stability and give Kody the ability to not have to worry so much about holding his trunk up.  Also got the note from the physician about his schooling situation.  Now I just have to get a hold of someone to make an appointment for the registration.  Okay so I left a message and they are suppose to contact me back.  

Kody is now 5ft tall and 71 pounds.  That's a 4 pound gain since May 28th.  That's not too bad of a change.  The clinic weighed his wheelchair while he was out of it and then subtracted the weight of the chair from the weight with him sitting in it.  

We will see the clinic again next January for a visit.  His next appointment isn't until November for the cardiologist. 

As Kody's father and I talked over dinner on Saturday he made me notice something I haven't until that point.  Kody seems to have stabilized medically.  Wil pointed out how things haven't seemed to changed over the last while.  He remarked that maybe the prediction that was made about this coming October may not come to be true considering how things seem right now.  

Kody sees the MDA doctor this coming Monday.  He actually had an appointment scheduled today for the Orthopedic doctor but missed it.  I'm not completely frustrated about missing it though because it's only for observation purposes anyways.  With the current status of his heart surgery of any kind isn't an option because the risk of fatality outweighs any sort of benefits that would normally come from things.  

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.