Six years ago today...

Six years ago today, we were told that Jessica’s heart condition was so severe that post-birth surgery was unlikely to be an option. Today, I watched her taking part in her Girls’ Brigade Explorer Sports’ Day. She usually trails way behind her peers in races but she managed to come third in the obstacle race and was in the lead at one point. A huge achievement for a little girl with only half a working heart!

I felt quite emotional watching her running around with her friends whilst remembering that day six years ago. Remembering how devastated we were, how we clung to our faith and prayed for a miracle. And here we are, six years on, feeling so very blessed to be able to watch Jessica grow, and thrive, and have fun with Sophie and with her friends.

It’s been a long time since my last update on this blog. Life has been ticking along fairly normally in that time. Jessica has been at school full-time and enjoying it. She is doing incredibly well. She’s in the top half of the class for reading and maths and has been awarded her Gold Reading Raccoon certificate for reading 100 books. It is lovely to see this whole new world of books becoming unlocked for her and seeing how much she enjoys reading.

Health-wise, she’s doing well on the whole. Her sats are mostly still in the high 70s/low 80s and she still has a reasonable amount of energy, although her exercise tolerance has reduced since last year. That said, she still manages a full week at school, finishing up with both ballet and Girls’ Brigade on a Friday night and copes well with both activities! She finds it a challenge though to keep up with Sophie who often runs ahead of her big sister. Long walks are also more difficult for Jessica now. We have started taking a buggy out on days out again. Jessica now has a Maclaren Major Elite special needs buggy which is much more suitable for her.

The current plan is to try and get Jessica to 18kg before her Fontan takes place. My impression is very much that the team are keen for it to happen as soon as she hits 18kg. If she continues along her current centile line for weight, she’ll hit 18kg in about a year’s time. We’re therefore anticipating at present that we are probably about a year away from the Fontan all being well. Jessica is due to see her consultant again for a heart check-up at the end of June and hopefully all will be well at that appointment.

In the meantime though, we’ll just continue to enjoy normal family life and making the most of our time with our two girls.