I'm not a great blogger when things are going well. But I have been reminded recently that many kids are not doing as well as Luke and success stories are important sources of information. You see, when we had Luke we had the choice to have surgeries or to let him pass naturally. We opted for the surgeries. It was a scary decision because I wanted Luke to have a quality life. At that time I would have appreciated hearing success stories of other kids with HLHS. There were so few... So here is an update on Luke's successes:
Luke started kindergarten last fall and is doing great. We have implemented a 504 plan where the school is aware of his diagnoses and precautions are taken. For example, at Halloween time the kids were to have an outside STEM pumpkin project. The kindergarten teacher opted to bring the project inside, mostly because of Luke. His PE teacher is also aware of his cardiac limitations and knows to let him go at his own pace. She does not notice a difference between him and other kindergarteners.
We moved to Nampa, Idaho on 20 acres. Luke was indoors for most of the cold winter. But now that it's in the 60s he and his brother are outside playing, chasing chickens, riding bikes, and just being little boys. He runs in spurts but not far and he walks a lot. I do carry him when we are in a hurry or if we have to go far. But is it him or me? I'm not quite sure.
Last January we went to Disneyland. Luke was able to go on the rides, but he is not a daredevil and so he and I did the more mild rides. He did stay in the stroller or his parents arms the 4 days we were at theme parks. We were able to get the disability pass at the parks which helped because I could push the stroller right up to the rides.
Luke is 6. He is happy. He is healthy. I love him and could not imagine a life void of his presence. I often forget he has HLHS. It is nice to imagine a healthy future for him. I anxiously watch new studies and trials for heart replacement. The future does look bright!
Easter Egg Hunt March 2018
Disneyland January 2017
Universal Studios January 2017
Dart Warz October 2017 (Luke loves Dart Warz!)
Oregon Coast July 2017
Eclipse 2017
Utah- hiking August 2017