So we found out Wednesday Brad is positive for
Long QT Syndrome.. He has to quit all competitive sports and we are being referred to a Long QT Clinic associated with the Children's Hospital..
To say that I was upset is an understatement.. I was SO SURE it was going to come back negative.. both Ben and My EKG came back negative the cardiologist even said he was leaning towards betting that it would be negative.. which is why when the Dr told me "he's positive" I was stunned, and in shock and so I didn't ask some important questions. I didn't ask which type (1,2 or3) I didn't ask if he can still take his allergy medication (so he's very stuffy poor kid).. and I didn't ask if we need to come up with an emergency plan for the school (something the Nurse suggested when I told her we were awaiting this diagnosis, I didn't pay allot of attention to her unfortunately way back at the pre-school get your schedule etc. etc. remember I was SURE it was negative)..
Here's what I know for sure...
We will be good, this is going to be a new normal but we've been here before.. I think that's what is so hard is I have prayed these EXACT prayers before. I've been specific, and I still don't think my prayers were NOT answered they were just answered in a way that will force growth for me, for Ben and especially for Brad and of coarse even Hunter and KayLea.. I am a bit away from being able to see the good in this BUT already Brad has made some goals, he wants to take some BYU online coarse's so he can take a couple AP classes next year (BYU online High School coarse's are NOT recognized by the NCAA and because he always assumed he'd play some kind of college sport he was very resistant).. he's even talking about maybe dueling enrolling in college/high school next year (I have some mixed feelings about that but if he makes it happen through grades work etc. i'd have a hard time turning him down!)
We are still learning lots, YES we know there have been a handful of Olympic and professional athletes with this same condition but for now we are taking the dr's advice and not having Brad play (those are VERY isolated situations and it takes a school/organization to ALLOW to take on the liability/risk and that's just not gonna happen and to be honest i'm not sure WE would allow it its just not worth the risk!)
This will certainly change the direction of Brad's life somewhat.. Sports were never his end game anyway he wants to be an engineer and so he can devote lots more of his time to the Robotics club (he was only able to devote about half his time due to sports etc) so for that I am grateful BUT we will be discussing what he can do.. for Brad's own sanity I think he needs to be able to run, bikeride etc. he loves that kind of stuff and so that will definitely be a discussion..
for me my goal is to try not to worry my self into a heart attack.. I am trying, I can not allow Brad to live in fear and so I need to set that example.. I am hoping once we see the specialist and learn more the fear will lesson.. looking into the future in 2 years he will be away from my control.. it already invokes allot of anxiety for me, and in just 3 yrs a mission (yes we've already speculated he probably will not be allowed to go foreign but actually Brad has always said he didn't want to cross any ocean so that's probably ok too..)
so i'm sure this is not the last post about this (damnit!) I am eternally grateful for the love, prayers, time to put our names on temple rolls and energy devoted to our little family and what we are going through.. I knew it already but I am so lucky!!! and THANKFUL... i'm working on a "what I am thankful for" post already in my head so stay tuned its a long list!
here's a brochure we found online that answers allot of questions...
http://www.heartrhythmcharity.org.uk/Documents/Booklets/Long%20QT%20Syndrome%20Booklet%20090113_wjh.pdf
ta ta for now...
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