Unfortunately she is in the beginning stages of heart failure. She also is having bouts of hypoglycaemia which is tied to the heart failure (they think).
She is under GOSH and is on the heart transplant list.
She lives life to the fullest she can manage, by 17:00 or so she is done for the day. she gets really frustrated that she cant keep up with not only her peers, but her Brother who is 2 years younger than her. She knows she has a *poorly* heart but doesnt understand what that means.
Life is incredibly hard for both us and her right now, she cant regulate her own temperature, so we have to check on her every couple of hours overnight during cold snaps or heat waves, its a case of layers, so clothes on and off rather than upping the heating or directing fans at her, add in the bouts of Hypos its currently checking every 90 mins that her Glucose levels are ok, we are waiting for a decision on what the the Cardiac boffs want to do about the latest symptom.
With a heart her future is mostly secure, without one we dont have a tonn of time left. It is the reality, and we have known it since the diagnosis at the 20 week scan. She is going to Nursery as much as she can but it really takes it our of her. We are trying to give her as normal life as possible and not let her diagnosis become who she is.
The yellow Spurs shirt is the first proper shirt she has as she is small for her age, she loves it and knows its *Tokkenham Hockspurs* and Daddy loves them. I want to try to get her up to the Lane as I know she would love it. She gets to stay up and watch the evening games, but in reality she is asleep before they start.
We were hoping she would be older before these things happened but her heart function has always been moderate at best and her sats now sit at around 76 as normal. We are optimists though and I know she will pull through,