August Can't Come Quick Enough


August can't come quick enough, the 11th to be precise. This is the day I've been waiting for, the day my car gets paid off. When Ethan was born I had a Vauxhall Astra sports hatch. It was lovely I loved it but when Ethan needed a specialised wheelchair it wouldn't fit in my boot so I bought a bigger car on finance, a Vauxhall zafira. It's lasted us for the last couple of years and last year we got Ethan a new car seat which turns to help make it easier to get him in and out. This is much easier. The problem is the wheelchair. It is so heavy and has to be taken apart every time it gets put in the boot. This makes going out with Ethan harder and puts a lot of strain on my back. It's easier when Steve is with me because we can take it in turns lowering the pain to both our backs!

Today Ethan had a dentist appointment. This meant he needed picking up from school, going to the dentist and then back to school. This meant 4 lots of lifting the wheelchair and Ethan into and out of the car. So tonight I was very glad of the hoists to lift Ethan all evening. My backs feeling a bit better this evening after a rest which is good.

By the end of the day most days I ache. Some nights I struggle to sit still or even stay sat on the sofa due to the aching. Our day usually starts early and today was no exception! Ethan was wide awake at 3.30 this morning then was grumpy which meant lots of cuddles until school!

He came home happier and we managed to have a mini disco in his bedroom while I swung him in his hoist sling! He was laughing away it was lovely! We had a lovely few hours before bed but then I noticed he had a bit of a warm head so checked his temp and it was slightly high. Ethan struggles to control his temperature so we have to keep an eye on him getting hot as it can cause seizures. I put him to bed as as I did he had a small seizure bang on!! He settled and has woken having another few minute one.

So although I'm tired and achy tonight I will be sleeping very lightly to listen out extra hard for my baby boy.

So August can't come quick enough so that on tired days like today I won't be quite as achy from lifting the chair in and out the car!!

#ARXGeneDisorder

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