Sunday, June 28, 2015

Letting Myself Think

Sometimes I allow myself to wander into a thought process that maybe I shouldn't.  I sit back and imagine what life would be like for Kody IF FA WAS NOT HIS DIAGNOSIS.  He would have recently graduated and be looking into schools as well as figuring out his career path.   He would have a girlfriend and be into sports of some sort.  I'm allowing myself to indulge somewhat, I think.  His bio would definitely still be out of the picture and Will would still be being the best dad for him.  He and Will have a bond that is something that makes me smile.  I thought for a while that he wouldn't have a dad to be around and someone who would get to know him as a person.  God brought us together and made an amazing family.

He'd still be short because it seems that he got my height in his gene selection.  I believe the last time the doctors took time to measure him he was 5'3" with the spinal curve.  My guess is maybe he would be 5'6" without the curve.  He definitely wouldn't be 75lbs though because of the muscle mass build if he didn't have the muscle atrophy caused by the muscle issues involved.

I have a few friends with son's his age and so I have watched the path he may have taken if not for the FA.  Okay time for me to come out of the fantasy .... back to reality.

Monday, January 19, 2015

I cannot believe it has been nearly a year since I posted anything about Kody.  Sheesh, sorry everyone.  He is awaiting news from the wheelchair clinic about his new manual chair.  This has been a project that has been months in the making.  First we went to the clinic to get the specifics of what was needed for him and what would work best.  Then we went for a fitting for the special back to help support him better and it turns out it makes him appear taller as well.  Finally will be when we make the appointment to pick up the new chair.  Now what to do with the chair he will go to the appointment in???  We will probably offer to donate it for parts or whatever since it has to go to some good use.  He has seen the cardiologist and they have spread out his appointments to once a year which is good.  His heart hasn't changed much within the last couple of years which is a good thing.  It is about time that it slowed progression down and gave him time to breathe.  He sees the MDA clinic once a year as well to track the progression of the Friedreich's.  He finds it a bit crazy though that it is the reason he goes to see them.  I think he missed going to camp this year since he aged out of it.  I mean technically by the time all the paperwork had to be turned in he would have still be 17 but by the time camp rolled around he was officially 18 years old.  Dang he is getting old.  

Unfortunately the school program he was going through he was not feeling so that went out the window with the coming of the new school year.  He preferred the way things ran in Florida and how well they communicated with him.  I can understand where he is coming from with that.  His big sis gave him a tablet during her visit this past August and so he turns on music and chills to that.  Oh wait ... is chill the right word for kids nowadays?  Heck I don't know.

So at this point all is well and he spends his time being a smartass 18 year old who tunes everyone out unless he needs something.  But I wouldn't trade that for the world.  He is a good guy, goofy at times and has a great sense of humor.  

Wednesday, March 19, 2014

Tuesday, February 25, 2014

Monday, February 17, 2014

In Mere Months

Our son will be 18 years old.  He will have made it two years longer than the cardiologist in North Carolina had thought he would.  It is amazing how things are.  Yes neither of us like the Friedreich's Ataxia but we are managing.  Does it get frustrating?  Hell yes it does.  It makes me angry that our son has been handed such a burden to carry throughout his life.  I find myself imagining what he would be like if he was not affected by FA.  He's handsome so no doubt he would be in a relationship with some girl.  This is his junior year of high school and he would be deciding on a college.  Or driving us crazy saying he was going to go find himself before deciding on a college .He does his best to keep up academically though sometimes he grows frustrated.  We tried to detour him from taking chemistry because we thought it would be too tough of a subject.  It should not surprise me that he is passing the class with flying colors.  I am going to invite Rikki to be an author of the the blog .... Would be great to have us both inputting on it.

Wednesday, January 22, 2014

Totally Different

I found myself having to contact Kody's school and nudge them.  Did I mention ever how I loathe having to do that with the school system?  Anywho,  I emailed them to ask what was going on with his classes because I had not heard from them nor had he when he was emailing about difficulties.  The response was a little bothersome.  They message me back a few days later to ask that the doctor send a form about his necessity for home based classes AND asked that he finish his classes ASAP so he can begin new ones.  Ugh considering they hadn't responded when he was emailing them around Christmas break .... He would have already been finished.  He actually asked me if he could just quit because it was a pain to keep having difficulties.  He has expressed the desire to return to a regular classroom and actually attend school.  It breaks my heart  to have to talk to him about it.  We both loathe the FRDA!!!!

Totally Different

I found myself having to contact Kody's school and nudge them.  Did I mention ever how I loathe having to do that with the school system?  Anywho,  I emailed them to ask what was going on with his classes because I had not heard from them nor had he when he was emailing about difficulties.  The response was a little bothersome.  They message me back a few days later to ask that the doctor send a form about his necessity for home based classes AND asked that he finish his classes ASAP so he can begin new ones.  Ugh considering they hadn't responded when he was emailing them around Christmas break .... He would have already been finished.  He actually asked me if he could just quit because it was a pain to keep having difficulties.  He has expressed the desire to return to a regular classroom and actually attend school.  It breaks my heart  to have to talk to him about it.  We both loathe the FRDA!!!!