Looking back over the year its always nice to focus on all the positive things the year has brought us.
We have ticked off some lovely experiences on Ethans bucket list.
Feeding a giraffe at Noahs ark zoo farm and being a zoo keeper for the day. Ethan loved nearly all the animals. Just not the snake!
So funny to see him telling us he didn’t like it. Great communication from him.
He also enjoyed a visit from his favourite Disney princess Elsa. He has loved Elsa since she came into the cinemas. His face was an absolute picture when she was singing to him, he even held her hand.
We managed a successful night away as a family. Ethan actually was the best sleeper and wasn’t happy when his sisters woke him up for a change.
We also enjoyed a break away together as a family of 5 at the hospice. We had fun just being away from home for 5 days, experiencing the zoo keeper experience together and meeting Elsa.
Seizures have remained around but we have had a few periods this year which have been slightly quieter which is a slight improvement.
His VNS vamp ups have been consistent in helping to keep him needing less midazolam. Only had a handful of times which have needed a second dose of midazolam this year.
We enjoyed taking our Cbeebies mad son to Cbeebies land. Our tickets were gifted from Merlins wand and it allowed us to be able to have fun riding in Postman Pats van, riding down the Night Garden River and flying around with the Go Jetters.
Ethan loved being able to go on the rides and experiencing his first proper try at rides. A day we will never forget where he smiled and laughed all day.
We have had a lot of lovely days out together at National Trust properties. Taking part in the Wallace and gromit trail and seeing the model from the film.
Ethan moved to a new class in September and has been a lot more settled at school.
He has been enjoying two swims a week which really helps his muscles.
Lots of time on the mechanical horse, rebound therapy and choice making. His school play was lovely as always.
We were able to purchase the eye gaze equipment for Ethan thanks mostly to Ethan’s auntie for walking the 3 Peaks for him.
This has been so fun to watch how clever he is with it and he also laughs at all of us when we can’t do it.
This will provide and exciting opportunity for Ethan going forward to allow him to communicate more successfully with us.
As always Ethan has worked hard with his physiotherapy. He has been working on bringing his arms to the midline and successfully eye pointing wants.
This is going well. Ethan got a new standing frame which will be great for his legs and overall strength. We are hoping to get him back in his walking frame next year.
Another year of amazing strength and determination from Ethan.
A year of lots of memory making and spending time enjoying life.
Let’s focus on the positives and not the negatives.