MDA Camp

On Monday we took Kody for a visit with the MDA doctor to get his physical and clearance for camp.  I had to make sure to bring the clearance from his cardiologist.  He is excited about going to camp this year and this will be his last year since he is 17 now and the age max 17.  The doctor was quite impressed with the strength level he has in his extremities.  It just confirms what we do for him is working in some respects.  He is not babied but rather left to do as much as he can.  He tires easily but does manage to do some of the essentials by himself.  He can bathe and transfer to the toilet on his own but sometimes needs help if he missteps.  For his bath we run his water and put his poofy and soap within his reach.  I am proud of him for not complaining about what he does not have or is not able to do .. but rather does whatever he can do on his own with pride.  

His halter monitor came up as the doctor expected it to.  He is still medication free and that is what works for him.  Life is life for him and he does not complain about much except when I interrupt his gaming time.  

FRDA has altered how his life is going but has not taken away the essence of what makes him .. him.

You Keep Surprising Me

17 years ago today I was scare of the outcome of giving birth to Kody.  He had been trying to be born since I was 28 week pregnant and here it was 5 weeks and 5 days until my due date and my water broke.  You would think he was in a real hurry for something and that he would have been born quickly but he waited almost a full 24 hours before making his entrance into the world.  Thank God for epidurals!  There was a time when I did not think he would be with us at this point in his life.  Doctors have given us timelines due to the FRDA and he has lived past them all.  So I guess doctors are not always correct and they are just giving an educated estimation.

Yesterday Will took the kids to see Iron Man 3 and to have an early dinner at Applebees.  Unfortunately I was unable to attend due to an injury.  Kody was upset with me for not coming but later on after he and I chatted he understood why.  

Happy Birthday Kody!!

April's Halter Monitor

Today we went to St. Joseph's to have a halter monitor place.  McKenna wants to have another one to compare this last one too that was done about a month ago.  He will call me with updates on results within about a week or so after the monitor is sent back into him.  I used to hold my breath with things like this BUT I have come to learn that stressing myself out does nothing good for any of us.  So until we have the results .... it is what it is.

Yes Another Halter Monitor

On Friday (4/12/13) we will travel back to St. Joseph's Hospital in Tampa for Kody to have another halter monitor placed to give McKenna another recording to compare the last one to.  We also have to have his camp physical form filled out by McKenna due to the level of heart damage he has.  This is to okay him to be stable enough to attend camp this summer.  This will be he last year attending MDA camp because he will have aged out.  We are also looking at the options for school for him next year.  Do we continue with Hospital Homebound or consider virtual classes?  There is a few things to consider since he is getting older.  I cannot believe he will be 17 next month.  I remember when the cardiologist said they would be surprised if he seen 16 and he blew right past 16 with ease.  Now onto the next milestones ... and paths .... God will take the wheel and show us what is next.  Just have to trust in him and cherish the time we have .....

Dr McKenna Called About Holter Monitor Results

First off, I have learned when the doctor himself is calling you that the news is not what you want to hear.  Secondly, I was right in the first sentence.  His 24-hr monitor showed more atrial fibrillation and tachycardia.  McKenna suggested we start him on a small dose of Atenenol (beta blocker) that he said may or may not work.  This is something we tried before and the medication made him sick, vomit, faint, and blood pressure drop.  So, we will not be putting him back on that medication.  I could hear the concern in his voice as he was talking to me.  It is an unmistakable sound in voices when they are concerned.  I had figured there was not much change because I hadn't heard from him about the monitor and it has been a little while.   

Seems when we think things have leveled out with Kody .... things change for the worst.  At the moment I am still working to process this new information .... not sure how to feel about it all.  We just came back from an amazing vacation and then I get a call from his doctor that is just like wow.  

((HUGS))

Kody Champagne: Cardiology Visit

Doctors Visits Tend To Make Me Nervous

Yes, I admit it that they make me completely nervous.  I think more so because this is a CARDIOLOGY visit so it will give us a look at how the Hypertrophic Cardiomyopathy is doing.  It has been about six months since he seen doctor McKenna.  The one thing that I do know is with every appointment there has been progression, even if it only a little bit.  I will post a video blog tomorrow on everything since today is going to be crazy busy.