Gabby is doing very well. As I mentioned in a previous posting, she gets to go an entire year between cardiology visits. She has good energy. In fact, at times it seems like she's constantly moving. She's smart, loving, and she can have quite the temper at times. She can also be pretty sneaky when she wants to be. In other words, a pretty normal kid except for the scars. At least that's how we try to treat her.
She still has problems with her gross motor milestones. I mean, she can walk and run, and she can jump now, but she's not where other 4 year-olds are. That's why she gets weekly physical therapy through the school district. She's also still really short. She's still just below the 3rd percentile for height. However, she comes by it honestly considering that most of the folks on both sides of her family aren't terribly tall.
It's a feeling of accomplishment to have a child (and family) who have been through what she went through (and we went through together) and come out the other side doing as well as we are. According to her cardiologist, she's an ECMO superstar. That's some of the best news I've ever had. It shows that a child can go through all that she did and do well. Her outcome is exactly what the doctors and nurses who work with these types of problems strive for. While we have more surgery ahead of us during "late childhood" (age 7 to 10), we've been through the worst of it. We hope. If you know a family with a child with a CHD, let them know that it really CAN turn out ok on the other side of the surgery. 
Linda,
ReplyDeleteI am so glad to hear Gabby is doing well. We have some other friends in the neighboorhood whose son has a CHD. He is now in (I believe) 2nd or 3rd grade, but his parents still have to regularly push him around in a stroller as the hills are too much for him. His face is also quite frequently blue.
So it makes me very happy that Gabby (and you guys) don't have to go through that stuff.
Is she getting OT, too? If not, I can help you with that process, as I went through a nine month training course on IDEA. (The Individuals with Disabilities Education Act). 500 pages of Special Ed law, baby!
Let me know if I can do anything.
Until then, keep on being the fabulous & supportive mom you are!
Lilly
Hi!
ReplyDeleteI came across your blog today. I'm happy to hear that Gabby is doing well. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
www.lucky10.etsy.com
Thanks so much and we look forward to reading more on your blog!
Thanks,
Vito Lisa