Re: Food glorious food

A parent of a child with Treacher Collins Syndrome coincidentally posted her own blog update about feeding but has gone into far more detail than I have on what it actually involves, you can read it here:
http://storyofkobe.blogspot.co.uk/2012/11/a-day-in-life-of-kobe-and-his-feeding.html?spref=fb

This is the first time I've heard someone talk about using blended food straight in as I thought you had to use specially designed formulas but I guess you learn something new every day.

Food glorious food

It's no secret that I enjoy my food even if some of my friends like to joke that I only ever eat ham sandwiches  but I've not always been able to eat properly. As far as I'm aware up until the age of eight I had a gastric feeding tube. For those who are not aware a feeding tube (or at least the one I had) is surgically implanted in order to deliver food straight to the stomach, it is held in the right position by a small balloon and the outside has a lid on it which you open when connecting the food supply.

As far as I can remember mine looked pretty similar to this

Some of you may think that it sounds horrible but the only really bad thing about it for me at the time was that it took away from play time. That said I didn't like having it changed (every time the balloon deflated then the tube would become loose and indicate that it would need changed) but I'm not sure why I got so worked up about it since it didn't really hurt it was just a bit uncomfortable. I did eat normal food as well (I think) but it wasn't enough to keep my weight up mostly because I struggled to eat with the way my mouth is. I  do still remember the day that the doctor decided I could do well enough without it at the quite late age of eight and I was very happy to be rid of it probably because it meant I would be more like my friends and also because it meant I could start swimming. The removal process just meant taking it out as if it was being changed and leaving it out, no surgery necessary. A dressing was put over it and it closed from the inside all by itself unfortunately it didn't really close up on the outside and so I like to joke that it is my second belly button. I know I am very lucky since I don't need it any more but it is quite an obvious scar and every now and then it becomes more sensitive (it is quite sensitive to touch most of the time) which can be annoying.

Even though I didn't have the feeding tube any more I still wasn't on a 100% solid diet and I had these so called malnutrition drinks called fortisip several times a day to boost my calorie intake. I guess you could say they are kinda like a milkshake and come in different flavours like chocolate, tropical, strawberry, banana etc. Whilst I could probably go without them now I'm not so big on the whole breakfast thing in terms of cereal or toast or whatever so I still have a double fortisip to start the day (it may also be that |I'm slightly addicted to them ha ha).

mmm yummy!

In terms of eating speed before I started university I was able to eat a lot more quicker than in the past and there wasn't so much of a delay between my family finishing dinner and me finishing dinner. Unfortunately when I started university I got a bad throat infection which seemed to drag on and combined with stress and other seemingly misdiagnoses I had quite a long period where my eating slowed way down and I think even after my throat was fully healed my confidence was knocked which meant that my eating didn't immediately return to the speed it was that. Thankfully I think I've started to speed up a bit and hopefully I will be able to eat at a more normal pace despite the limitations of my jaw.

Whilst I do enjoy many different kinds of food I do have one addiction and that is to Krispe Kreme's original glazed donuts. It is a good thing that they are not available here as I would probably eat several a day as they are that good. They only appear to be available in England or the USA.

My not so secret addiction

Thanks for reading.