One question we are asked a lot is about Samuel’s bedtime. ‘Does Samuel sleep well at bedtime?’ This is often asked by other parents, especially when they see Samuel in a very long, deep sleep and I think they worry that he wont sleep for us at bedtime.
But he sleeps very well at bedtime and that is because we cheat. At 10pm each evening Samuel has a medicine called Chloral Hydrate which we call his sleepy drug. It is also thought that Chloral Hydrate has some anticonvulsant properties which of course is an extra bonus.
He’s been on this medicine since he was around two months old as it was felt that he didn’t have a proper sense of night and day. He is only on a small dose of the medicine (about half of what he could have for his weight) but it is very effective. He still does wake in the night if his seizures are very bad, he has a wet or dirty nappy that has disturbed him or he is unwell, but generally our nights are very good.
With the Ketogenic Diet being effective now, I feel a bit more confident about looking at weaning Samuel (and us!) off Chloral Hydrate as he may be better now at night and perhaps he doesn’t actually need it anymore. But I will still keep it in our armoury, just in case!
If you don’t understand about Samuel’s condition this may surprise you but he stays up with us until we go to bed. He is not really aware of the world around him and isn’t disturbed by noise or light so he snoozes with us in the lounge until we decide to go to bed. That way his Dad (who misses him dreadfully when he is at work) gets extra cuddle time in the evening and I suppose is a habit we’ve got into.
Samuel moved in to his own bedroom on his first birthday. Before then he slept in his cot next to our bed on my side of the room and I’d often shuffle down the bed so I could sleep while holding his hand or just lay there staring at him. We both found it extremely difficult to come to the decision to move him out into his own room, but my father bought us a video monitor and that made things much easier (I do have the volume up very high and still lay in bed staring at him during the night!). We’ve so far (will just quickly touch everything in sight that may be wooden) not had any problems with Samuel’s breathing, so feel that he is safe in his own room.
Another little achievement we made is taking Samuel off his saturation monitor. Saturation monitors are used to monitor heart rate and oxygen in the blood. This has always been a frustrating piece of equipment as they aren’t designed for children who twitch and jerk a lot and it would often have a poor trace and give an inaccurate reading. There were times that I would notice that it didn’t seem to react when Sam had a seizure but would alarm when he cried afterwards! I told Samuel’s pediatrician that I was going to stop using the monitor and he said that he was very happy for us to do so as we have so far not had any problems with his saturation levels or his breathing. We are keeping the monitor though as we may wish to use it when he is poorly.
I wonder if you are reading this thinking that this all sounds so very alien to you. Quite bizarre in fact. But to us it is normal and works very well. Samuel is like a very little baby, so isn’t distracted by things that other 18 month old children would be. But anyway, what matters is it works and that is all that matters.
This post has been included in the the #definenormal blogging challenge. Pop over to Just Bring The Chocolate to find out more and read other #definenormal posts.