Just another day in the office!

So this morning started with Ethan having a seizure. When Ethan has a seizure after 5 minutes he can have a shot of midazolam. After a further 5 minutes if the seizure hasn't stopped he can have another shot. After a second shot an ambulance has to be called. Today's seizure stopped on the tenth minute narrowingly missing needing a second shot. Whilst midazolam is a very effective drug and stops the seizures it comes with its down falls. It makes Ethan very sleepy to start with knocking him out for a few hours. But once it starts to wear off it makes him very sick. Today he was sick twice in an hour both times needing bath. The midazolam then makes Ethan very grumpy. 

Ethan's seizure are becoming more predictable now coming every 3 weeks and most weeks 3 weeks to the day. I should be getting more prepared for them but I'm not! We've had a lovely busy week seeing friends with a lot of travel and so my housework and chores have taken a battering. I've also been extremely tired what with doing fun things and Ethan getting up at 3 and 4 in the morning. But today it's made me realise that doing nice things means I'm catching up for weeks! I've sat cuddling ethan this afternoon and wanting to tidy and clean. I need to get more organised so that when this happens next week I'm prepared.

I've spent most of the afternoon crying today. You'd have thought I'd be used to Ethan having seizures by now, and generally I am, but today I kept watching him and I just kept feeling sad and helpless. I couldn't do anything to help him or take the pain away. I'm having a day where I hate the genetic disorder, i hate epilepsy and I hate midazolam, but most of all I hate the effect it all has on my baby boy. No child should ever have to go through this and no parent should ever have to go through the pain of seeing their child go through this. 

Everything's becoming increasingly harder as Ethan gets older. Just a simple trip out is hard. I constantly worry about Ethan how he will cope with new situations. He has a strict routine and gets very upset if we can't stick to it. This makes going out hard as no matter where we are I have to stick to the routine. As Ethan gets bigger its harder to move him and lift him. Yesterday was interesting having to change his nappy in the back of the car on the freezing motorway! Everyday brings a new challenge, normal things are just as hard as when he's having a bad day.  I love my baby boy and will do anything for him. Making his life easier and helping him to be happy and feel safe is the one way I feel I can help him.  All I can do to help is make Ethan as comfortable as I can. I've had my weak moment today and let it get to me but now i must put my strong exterior on and carry on for Ethan. 

Sweet dreams

Ethan has scoliosis. This means his spine is slightly curved. It's not something you immediately notice as Ethan doesn't sit or stand unaided, but when he is being held in a sitting position you really can notice it as his back curves out to the right. Ethan also has "frogged" legs! This means that when lying or sitting Ethan's legs flop down to the side in the same shape as frogs legs! Hard to describe. Ethan has had some scans done on his hips to check the joints as he doesn't weight bare all the time. We are still waiting for the results but were hoping all is well and that he just has naughty legs! 

Ethan's physio suggested a sleep system to help with his posture and improve his legs. At first I imagined this big contraption which would strap Ethan into place and I wasn't to sure at all! I obviously agreed to have it as whatever will help my little man I will at least try! When they bought the sleep system round and got it out the box I felt so relieved! It's such a simple design and I knew Ethan wouldn't be bothered by it. 

Here is the first layer which fits to the cot mattress:

This shows where Ethan needs to lie in order to be straight. On top of this sits what I describe as plastic book ends! These are what will keep Ethan straight and aim to straighten his back and keep his hips inline bringing his legs together. As part of Ethan's condition he has what's called dystonia. Which means his muscles go between being stiff and relaxed. Some days Ethan is easily able to straighten his legs and the next he could find it hard to straighten his legs because his muscles are so tight. This sleep system will hopefully help to relax his muscles and train them to be in a better position. 

Over the top of the bookends goes a new mattress which moulds the sleep system.

Ethan then lies in the sleep system. It's so simple and there's no need for him be strapped in or restricted at all.

As you can see Ethan is straight in the system and his legs are pretty straight. Ethan sleeps well in it and we're hoping to see an improvement in his posture :)