This is awesome.
We haven't done much looking for books, funny enough, cause we do use books on so many other things! Maybe cause in a way it's not new, it's just always been a part of this life, but I'd love this.
The thing that we hope for and are working on with him is that he'll 1) really understand himself - body and mind - and 2) be his own best advocate for what he needs - especially in the medical system which isn't designed to be patient centered. We want him to be able to communicate clearly what's happening and what he needs. I'd also say we've changed our diet as a family to be more heart healthy (not that we were bad before, but it's a new lifestyle for us!) and that healthy consciousness as way of life seems important.
Keep us posted.
Aspen
------Original Message------
Hi all,
It's been on my heart since our sons diagnosis to create a book just for him and now it will include his sisters journey as well. and one we can use to spread our story and shine the light on CHD.
I was able to get "Riley's heart machine" however it was a little old for him (3 at the time of his sisters surgery) and wasn't quite what i was hoping for. I then found a coloring book "Jeremy's pacemaker"-I think- however, that felt outdated and since we aren't sure when he'll need his, we will keep that as a resource. and i found it after my daughters surgery and kept it for myself seeing him have difficulty in seeing his sister in the hospital.
so while we found a few on pacemakers, i am curious to get feedback as to what resources in the children's book department you've found and how helpful it was/has been for your kids? and what you would like to see in a book?
I do the shutterfly albums for my kiddos and have began to journal for them in telling their story in a positive way and my thoughts for them as they grow and change. I also want to instill in them a proud feeling about their CHD and don't ever want them to be ashamed of their hearts. We try and document as much as we can with the time we have to sit down and reflect, as we re-read and discuss a lot of what will happen at appointments, so i guess i am just trying to get started and gain any feedback you have for me that you feel would've helped your little ones, or even you as an adult CHD patient, what would've done/or would like to see be different prior to surgeries.
Thanks all. This is truly a work of heart. We just adore all of our CHD kiddos, to the moon and back.
------------------------------
Lydia Howard
Clovis CA
(559) 917-2843
------------------------------