It is really, really tough knowing our kids have an uncertain medical future. My nine month old has avms in his leg with limb enlargement and a suspected avm near his ear. Recent MRIs show additional flow, but it is not clear where the lesion is located. He pulls on that ear, but he does not seem to be in any pain. The affected parts are warmer and he has birthmarks over the areas. We monitor his cardiac output for greater heart failure and we meet with ortho for limb xrays and measurements. We are also on a "wait and monitor" plan. We are going for a second opinion with Dr. Burrows in Milwaukee, but I'm hoping she has the same recommendations. I trust our Chicago team, but it never hurts to have more specialists weigh in with these cases.
With everything, I try to focus on how he is doing daily. He is happy, growing, and curious about the world. Honestly, that is everything a mom can hope for in a kid. He doesn't seem bothered by any symptoms related to his condition. We are meeting with early intervention next week to start work on his gross motor development and get this little guy walking!
Does your son have any noticeable symptoms? When my kid was first born and we started down this rabbit hole, I just wanted it "fixed". The more I learn, the more I realize that waiting (if possible) truly is the best approach. My son will need embolization at some point, but the more we can push that off, the better. The procedure is typically a series of embolizations over months or years, and he will be better able to handle that when he is older. I could talk FOREVER about this, but I want you to know I understand. It's tough. Some days are okay, and then you remember there could be a serious problem in your son's future. I'm at my best when I stay grounded and enjoy playing with my kid and his little big leg. One day something worse may happen and we will watch and deal with it then.