When I look back over the past year, I am sweetly reminded that we have reached another milestone – Carter has a birthday tomorrow, he will be 8 years old. The memories of those many weeks in the Cardiac Intensive Care Unit for each surgery have slowly receded in my mind; not forgotten, but now just a vague cloudy recollection of a time best left in the past. Today I focus on the smart, lovable boy who loves to play soccer, loves his hermit crabs, loves to read and loves to play video games.
Over the past year I have connected with many parents of children with HLHS. Everyone says the same thing – We wouldn’t have it any other way, I wouldn’t change a thing. I understand this, I really do, but parents in the future will have options we never had – fetal intervention and gene therapy. And someday, just maybe, HLHS will not be the most common cause of death from cardiac defects in infants.
What happened to the rest of your blog?? I just found this tonight!! My son is 3 weeks post fontan and 2 years and 1 month old. I thought this was an amazing find!!!!
ReplyDeleteYou made my day Danielle! I'd love to hear how your little guy is doing - feel free to email anytime. I've had a little break from my blog, if that's what you mean by the rest of my blog... well, my little heart guy has been keeping me very busy with summer fun plus we started a new soccer season in August. Yes that's right - he's a soccer player, Academy soccer, a step away from Select. See what you have to look forward to with your little guy! If you would have asked me 8 years ago if I thought my son would play soccer I would have said no way, but this is the purpose of my blog - to share with parents the hope, and reality, that our children can live normal and happy lives. Be happy and well!
DeleteYou made my day Danielle! I'd love to hear how your little guy is doing - feel free to email anytime. I've had a little break from my blog, if that's what you mean by the rest of my blog... well, my little heart guy has been keeping me very busy with summer fun plus we started a new soccer season in August. Yes that's right - he's a soccer player, Academy soccer, a step away from Select. See what you have to look forward to with your little guy! If you would have asked me 8 years ago if I thought my son would play soccer I would have said no way, but this is the purpose of my blog - to share with parents the hope, and reality, that our children can live normal and happy lives. Be happy and well!
ReplyDeleteI shared this with everyone I know that has a l/o with hlhs!! I will absolutely email you! I love, love, love to hear positive news about it! Thank you!!!
DeleteThank you Danielle, and best wishes to you and your family!
DeleteI just found your blog! Always happy to meet other parents. Our HLHS daughter turned 8 March 2nd. My son and I also have CHD's and all three of us have pacemakers. But our little girl, named Cadence for heart "rhythm", is the love of our lives. She has some complications but you'd never know if you saw her dancing up a storm with her friends at her bday party. Anyways, I subscribed to your blog. :) Melissa
ReplyDeleteHi Melissa! What beautiful names, Chance and Cadence! How wonderful to hear that Cadence likes to dance - children with HLHS never cease to amaze me. What they lack in the physical heart structure, they certainly gain in love of life. Best wishes to you and your family, stay heart healthy and happy! I'm always happy to share a heart family's story so please contact me if you're interested in posting yours here.
ReplyDeleteJulie