Long QT Syndrome

Well, this will be the beginning of a major journey for the Miller family. As most of you know we have been praying about a condition that Jake was thought to possibly have, called Long QT Syndrome. Long QT has to do with the electrical impulses of the heart, not the heart itself. Basically the heart waits too long to relax before it contracts again. If it waits too too long it causes sudden cardiac arrest. Jake's heart itself is strong and healthy. He had some of the symptoms, (a questionable EKG - there are no outward symptoms. Jake feels nothing) but we really didn't believe he had the "syndrome". So the cardiologist sent him for genetic testing just before Thanksgiving to make sure. Well, we finally got the results and they came back positive for Long QT Syndrome. Not what we were expecting to hear, but the journey of faith, and trust has begun.
I'll try and make this as short and simple as I can. Basically there are 3 levels of LQTS; 1 is the least severe and 3 is the most severe. Jake is level 2. The good news is that that won't change. This is not something that gets worse or better as time passes. The not so good news is that level 2 is the most rare and therefore least researched level. Back to good news, the little bit of research they do have, it seems to lean closer to level 1 than 3. Jake has been on Beta blockers and from the EKG today they seem to be doing their job and keeping his heart in a better rhythm. With Level 1 LQTS the Betta blockers are about 98% effective at helping prevent sudden cardiac death, Level 3 they are not effective at all, level 2 they believe to have 90 - 95% effective rate at preventing cardiac death. What seems to effect the people in level 2 and cause the sudden cardiac arrest is a sudden unexpected rise in heart rate. This means... unfortunately that Jake won't be able to be involved in any kind of sports, no roller coasters, no jumping into a cold swimming pool, no throwing him up in the air, no trust falls, no zip line, it's even recommended that people with this stage don't use alarm clocks b/c that causes a jolt and startles a person. Since ther are so many things in life that can startle Jake that are out of our control, that is why we have the Beta Blockers to hopefully protect him in those situations. G and I will have to get very creative in how to allow him to be a boy and not become overprotective. As I sat in the office today I felt like the Lord just continued to tell me "I've got him in the palm of My hand" We will have to just do what we can do as parents. Make sure he's taking his medication, and be smart and responsible in his activities. It will be a challenge to raise Jake in a way that he's not bitter about being so restrictive in his activities, and to make sure we're not raising him in a household of fear. The Lord does not give us a spirit of fear and that is NOT something we want to instill in him as he grows. I guess that's the long and short of it. I'm sure I'll write more as I learn more.
You are welcome to post questions, but there's no guarantee that I'll have answers. I'll do my best! Thanks for all your prayers and support and welcome to our journey. It helps to know we have so many standing in the gap for us when we fall and interceding on our behalf. We love you all!!