One step forwards and two steps backwards?

There was a time when I loved nothing more than all night parties on the weekends, made all the better if I survived long enough to enjoy the delights of breakfast club before retiring to my pit to sleep off the inevitable hangover.

That was 15 years ago and life was very different then. These days I am not so keen and am often be mocked by the blokes at work for my seemingly early bedtime, usually somewhere between 2100 and 2200. Plenty late enough in my eyes, when having to rise for the 0500 dog walk.

We both knew that George's arrival would change all of this, we were mentally prepared for sleepless nights and had come up with contingency plans to help combat the fatigue, but nothing could prepare us for what we have experienced.

It has been a little over 5 months since George arrived home from the NICU, and it feels as if we have shared every single night together, enjoying lads and dad's all night parties. Mummy has joined us for her fair share as well.

The unfortunate thing is that these parties have been far from enjoyable. Infact most of them have been horrendous, spent trying to soothe and calm George whilst he's suffered unimaginable pain and distress.

Medical professionals have been racking their brains for the past 5 months to understand why George becomes more pained and distressed throughout the night, but are still searching for the answer.

This trait has affectionately earned George the nickname Gizmo, and he is even the proud owner of a soft toy of his namesake.

George's complex nature has rendered him a tough nut to crack, but last night has made us believe that we are making headway.

We are unsure exactly why he experiences this discomfort but it's thought to be dystonia or cerebal irritations. Regardless of the root cause, for the moment our only available remedy is paracetamol and morphine.

There was a time that even they didn't settle him, but these mixed with his other cocktail of drugs that he takes throughout the day, seem to be helping him.

Since his hospital discharge, George has suffered every night, just as he always had and we have administered his drugs to help ease his pain and suffering.

We hate that George suffers. We would love nothing more than for him to be pain free and not require Morphine, but for now all we can do is manage it as it presents.

Historically these pained episodes have been pretty routine with him becoming extremely distressed around 0200. Since returning home, this hasn't been the case. His episodes have been happening earlier in the evening. This has enabled Natalie and I to soothe and comfort him together before Natalie retires to bed, leaving George relatively settled and only requiring the odd cuddle when he stirs.

His sleeping has become much better but it is still predominantly throughout the day. The recent shift in unsettled times has resulted in him sleeping a few more hours through the night. So much so that he slept from 1245 last night until 0915, whereby he was only woken due to a nappy change.

Exciting times we were thinking, finally George will sleep through the night and Natalie and I can go to bed of an evening like we used to all those months ago. Tonight, George suffered his unsettled period around 2300. Morphine and paracetamol were administered and he has fallen asleep around 0030.

We don't believe that last night was a fluke and we truly believe that we are moving in the right direction. Tonight, we are looking to be on track for a similar night to last night. Our fingers are well and truly crossed, but we are worried that a big part of last nights success may be down to his increased seizure activity.

Since the weekend we have noticed a significant increase in George's seizures, worryingly only a couple of weeks since a medicine review and discharge from hospital.

Natalie and I are learning more and more about seizures all the time. They are distressing and horrible to witness, but unfortunately they have become part of daily life for us, with George suffering from numerous episodes throughout the day. Some seemingly so long that they bring on a state of panic and some so short that you question what you witnessed.

One thing that we have learned with regards to seizures is that they are absolutely exhausting for the person suffering and we are really hoping that this isn't a contributing factor towards our successful sleep last night.

I slept on the sofa and managed a few hours solid sleep whilst George slept in his nest all snuggled in the living room. Natalie slept from approximately midnight until her alarm at 0500.

Whilst having our morning brew and setting up George's feed, we both agreed that we had experienced the best sleep in a long time and commented on how refreshed we both felt. It was great, but was it all at the expense of George's seizures? We will have to wait and see.

In the meantime we keep trying to capture seizure activity on camera and send it for reveiw by the epilepsy specialist. They have today recommended an increased dose of one of his drug's, so hopefully that will help us to regain control of George's seizures.