Time is something I never take for granted with Ethan.
Each year that passes by makes me feel super lucky to still have my baby boy with me.
Making memories of each moment is very important to us. There are lots of things that get in the way daily so making the most of the non medical days are important!
This year has been no exception.
This year we gave Ethan another sister! He now is a big brother again to little Florence.
This was the best thing for all of us as a family. Ethan has taken a while to get used to Florrie, but with each day he gets more excited to see her. She's very enthusiastic and Ethan is taking a while to warm to this.
She already adores Ethan and is constantly by his side.
We got our first Wav. A car that has changed our lives. Not having to lift Ethan and his wheelchair in and out of the car has made going out for days and going to appointments a whole lot easier.
Unfortunately, our lovely carer left us at the end of last year. Jasmine had been with us for a couple of years and was incredible with Ethan.
We miss her lots but understand that other commitments needs to come first. It didn't take us long to find a new carer as Ethan is so smiley everyone wants a piece of him.
We have had a lovely time with Natalie so far. Natalie has fitted in well to our care package and Ethan has great fun with her allowing us a bit of respite.
We have had some lovely stays at the hospice. Our favourite one was in December. We went up with a family we are friends with. It gave me time with one of my lovely friends without us having our boys with us, but it also gave us a trip out to go ice-skating as two families together.
We had great fun all taking it in turns to push the boys around on the ice. It was wonderful to see them so happy.
Ethan has been working super hard as always. He has come on with his eye gaze work.
Ethan's understanding is really good and when he's well it's important to stimulate this as much as we can. Watching Ethan on the eye gaze is exciting for the future.
We have had lots of lovely days out together. A big trip to Bristol zoo was a highlight for us all. Ethan loved looking at the aquarium area and being up really close to the penguins and the lions.
A big bonus was a Changing Places toilet to make our day easier.
Ethan had his first friend round for dinner last month.
Its something I've always wanted to do for Ethan. It was lovely to see him interacting with his little girlfriend. Something that isn't as easy to do when you have children with complex care needs.
We will definitely be doing this again really soon.
Obviously there have been lots of medical things going on in the last year. Ethan had his peg changed and botox in his legs.
He's had his VNS vamped up and he's had many a trip to hospital, some even in an ambulance.
Its often easy to focus on what doesn't work for us, it's nice to look back at fun things we have done too.
I hope these are the things that stay with us most.