The summer holidays are nearly over.
I absolutely love having Ethan home for the holidays.
Ethan goes to his dad’s every other weekend so when he’s at school we only spend proper time with him every other weekend. So the holidays give us lots of time to spend proper time together.
Don’t get me wrong the holidays are very hard. Having Ethan home all day means helping him as he’s unable to do anything for himself. He needs help for absolutely everything. He can’t do anything unaided. Finding activities he can access while I sort his sisters out is important so he’s not just sat there.
Manual handling during the holiday is no where near as much as it used to be but it is still present. He needs adjusting in his chairs, or rolling and lifting bits of him while changing him. While we’re out Ethan still needs lifting to be changed or to access swings. We’ve tried to do days out with changing places but this doesn’t happen all the time.
Physiotherapy is very full for us and for him. Stretching Ethan and helping him into different positions is hard. You are careful with moving around him but it still takes its toll on you while you are stretching, twisting and bending.
Attending to Ethans medical needs is very time consuming. That along with sorting the girls out with food and getting ready etc I feel like I spend my day doing water feeds, medicines, pad changes and feeding all the children. Fitting in the fun things in between is very hard and it takes a lot of multitasking and prioritising to make this happen.
The holidays have been a real mixed bag for us. We had our first full family respite stay at the hospice. We had a great week making amazing memories together. We had a visit from Elsa to sing to Ethan followed by a trip to the zoo to be a zoo keeper for the day feeding lots of animals. We also managed lots of time with the girls on their own giving them much needed one to one time with us.
Seizures unfortunately haven’t been great over the holidays. We’ve tried not to let them ruin our time together but that’s easier said than done. It really puts a downer on an amazing day when you see your baby boy so poorly and upset from seizures.
Sleep hasn’t been absolutely hurrendous, just all over the place like usual! When Ethans not at school he sleeps worse as he’s not being worked hard all day. I try my best to keep up the level he’s used to but it’s a lot harder with a toddler in the house now too! There have been lots of early mornings and very late nights too!
Usually during the holidays Ethan doesn’t like to relax. He likes to be doing things all the time. This holiday he has been super chilled and has loved being at home and out of the house. We have stuck to his routine and we even managed a pj day without him getting stressed. This is amazing for him and has made things a lot easier this holiday.