This Wasn't What I Ordered.

Saturday 25th April We have internet, finally. After a full 7 days of Greg trying to work, me trying to keep up with blogs and Alices...

Saturday 18th April Today was non stop chaos. Alices wonderful carer came and collected her at 8am so she was safely out the house for...

Saturday 11th April Spent the entire day frantically working on the The Shit Shack, in time for the move on Friday/Saturday. We complete...

Saturday/Sunday 4th, 5th April. Both days this weekend I have been totally confined to barracks with Thing One and Thing Two, while Greg...

Saturday 28th March I had great plans for today. I was going to finish packing some things for our non existent house move, then clean...

I was going to post about this latest comedic disaster as part of my weekly Lockdown Series but the more I think about it, the more...

Saturday 21st March I had hoped to kick off this week with some humour and wit. And yet despite the first words out of Alice's mouth this...

Saturday 14th March 2020 Today we went in search of soap in prep for the mid week self imposed lockdown. It seems toilet roll is just the...

The Georgisms were coming thick and fast at this stage, in fact I think they possibly peaked. Alice's relentless therapies and hospital...

Now I know for a fact that this was a time in our lives when Alice's behaviour was really starting to cause concern and yet oddly, Ive...

Looking back at this period of the journey, its what I wasn't posting that surprised me most. Much like before the updates are happy and...

2013 kicked off with the realisation that several family members were complete and utter wankers. I thought long and hard about sharing...

Lyla Mae Rich 17thDecember 2010 – 2nd August 2017 In August 2017 the NKH family lost a dear dear girl to this shit of a condition.Now...

When we approached 2020 I just knew it was going to be a big year. I felt in my bones that something huge was on the horizon. I have had...

Why didn’t anyone pick this up in pregnancy? NKH is so rare that no tests are done for it. It is not part of any newborn screening...

The second half of 2012 saw a massive down turn in Alices gastric health. After my early battles to convince medical professionals that...

2012 was a weird year in so a many ways. We began to realise that Alice was perhaps going to be less affected than most cases of NKH and...

You will often hear amino acids referred to as “the building blocks for protein”. Without protein we cannot live. Whist the nutritional...

Sodium Benzoate. Sodium Benzoate or SB, strictly speaking, isn’t a medicine as such, it is actually a food preservative that is used in a...

RETARD. There I said it. I even said it in shouty capitals. Chances are if you have a special needs child, or really just any sort of...