This Wasn't What I Ordered.

In the last Feeding Tube blog I said that our plan was to have her tube removed by Christmas. The reason for this time scale is because...

Face Book Status Update 14th Feb 2020 For almost 9 years this has been our life. 4 hourly meds and tube feeds 24/7 round the clock for...

Alice recovered from her surgery remarkably well. She didn't have any seizures, she had no issues with her breathing, she came round...

At approximately 10 months old, Alice was at the top of the waiting list to have her Gastric Feeding Tube (G Tube) fitted. In the...

I’m going to do this post in a few parts. Simple as it might sound, I feel there is so much to it and it deserves a to be discussed in...

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...

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...

One subject that seems to come up a lot is what exactly can friends and family do for the family of a newly diagnosed NKH child. Or...

When you get a child that wasn’t quite what you were expecting, there are many standard sayings and meme’s and poems etc that you will...

At this point I couldn’t hide my despair any longer and I came off Facebook. I wasn’t eating or sleeping, I stopped seeing my friends, I...

This blog post includes the Facebook updates from the day of Alices birth on 15th July 2011, to the end of that year. Looking back, it...