Upgrade

I don't know if I mentioned before but over the summer I had a trial period of a digital bone conductor hearing aid firstly because it is meant to be better than analog but mainly because the analog ones are getting harder to repair/are not being made any more apparently. When I tried it on it was very strange because things sounded different from what I was used to.The technician/audiologist made a big deal about how it had programs installed in order to block out background noise and hence let me hear a conversation in a noisy environment. I tried it for maybe a week or so before having to switch back to my old one due to the wierd noises I kept getting with the digital one, quite hard to describe but it made it impossible for me to hear people at times.

It was only a couple of weeks ago that we finally got a follow up appointment to try and get it sorted out and the guy (who is an awkward person to deal with in the first place) only decided to tell us then that the programs are actually only meant for people with inner ear damage (which he knew I didn't have when he first gave me the digital aid). So basically he had sent me off to trial a hearing aid which had programs installed that he basically knew wouldn't work for me. So I've now gotten it home again with the programs switched off so its basically the same as my old one excep digital. The problem is that I can't actually use it properly since the shoe to attach the reciever for my fm system (which I give to lecturers at uni and also allows me to listen to music etc.) requires the removal of the battery compartment which is attached by almost microscopic screws. We had actually forgotten about asking whether or not the old shoe would fit, assuming that it would but when it turned out it doesn't. Instead of warning us about the battery compartment needing to be removed he just sent out the shoe with a tiny screw driver thing but the fact is neither I nor my parents would be comfortable messing with it so we have to wait to go back up and have him sort it out which is rather frustrating.

A brief taste of freedom

Well its hard to believe that the first semester of the final year of my degree is over and that by the end of May I will be finished with it for good. As I stated in The many returns this year hasn't been as enjoyable as the previous two, with an increase in work load and not seeing my friends as much as I would like. I finished my first semester exams a couple of days ago and I think they went ok but it's always hard to tell especially with exams solely consisting of essay questions. It was quite good that I only had two since I only had two taught modules this semester as well and the fact that they were so spread out was good as well because it meant I had more time to revise. That said the extended period of revision is tough especially with the added pressure that comes with the final year and I'm definitely glad to be finished even if I only get less than a full week before having to start the second semester.

I'm a bit nervous about this upcoming semester, while I'm sure the behavioural ecology and sociobiology module will be interesting I'm rather dreading the marine processes module. Unfortunately I am forced to do this module due to the limited choices in second semester modules, when it came down to it I effectively had three choices and I had to pick two and one of them required me to do a specific module in the first semester which I didn't want to do as I had already chosen two modules that I really wanted to do in first semester. There is also the aspect that this is the end of my degree and that I will have to work hard without the cushion of having further years to boost my marks if anything goes wrong. As well as the final exams of my degree and whatever work we are assigned for the two modules there is also the honours project which I will have to finish the practical work for, complete a rather large report on as well as do a ten minute presentation in front of lecturers and fellow students without notes on it. The presentation is hard enough for most people, but I have the added worry of whether or not people understand me.

With the end of my degree coming it's getting to a point where I will have to make some major decisions about my future. I will have to decide what I want to do next, do I want to do a masters then maybe a PhD or skip the masters and just do a PhD, do I want to look for a job or maybe it might be I decide to take some time out. This is also the first time that I've had a potential long free stretch ahead in which if I decided to have surgery and that's a very big if then I could do that without disrupting my education.

Overall I have lots to think about and lots to do and while I'm sure 2013 will be challenging I'm sure it will also be rewarding.

Thanks for reading and sorry for the lack of updates.

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.

The many returns

Sorry for a lack of updates but due to being back at uni and not really being sure what to write has meant it's been over a month since my last update.

This is a bit of a mix of a blog post, the theme being returns. I'll start off talking about my return to university and the start of my final year. Unfortunately it has not been that great and I have to say I enjoyed last year a lot more than I am enjoying this year so far. I think it's a combination of factors the main one being that I'm not seeing my friends anywhere near as much as I did the two previous years, this is due to us all doing different combinations of modules (although most of us do parasitology, but that is only 3 lectures a week) and we have far less lectures than we did before with only two modules per semester compared to three the previous two years.  The other main factor for my discontent is the large jump in work load, I have two essays one for each of the modules plus a bunch of quite large assignments for my honours project (the honours project counts as two modules and takes place over both semesters, we chose topic titles over the summer and we have to complete individual projects including practical work, written assignments and a presentation). This means that breaks between classes are usually spent in the computer rooms working on these assignments compared to last year where it was not uncommon for us to just sit and chillax as a group over two hour breaks. Also I've now started the practical work for my honours project which means I'm in the lab from 9.30 to sometime in the late afternoon usually on both Thursday and Friday. It is a good experience and I'm sure I will learn a lot of useful techniques but so far it hasn't been the most enjoyable and I kinda feel like I've lost some of the confidence I gained from my work over the summer (different lab, easier work). It's not all doom and gloom thankfully one of my friends has many of the same breaks as me so their company has kept me from completely cracking up even if we are sitting working away. I'm also now off for a "reading week" so hopefully I can get most of the work on these assignments done.

Well that's the stuff about my life out of the way so if you wanted you could probably stop reading now but I'm going to continue rambling anyway.

As I've said before I'm a massive fan of Doctor Who and season 7 started over the summer and the mid-season finale aired a few weeks ago. The first episode aired whilst I was away on holiday, I had originally planned to wait until I got home to catch up but after the paper spoiled something in an article headline I ended up watching it on a poor quality internet stream, thank goodness I didn't read the full article before I watched it as it ruined a major plot point. I'm not going to post any spoilers of any kind but I will say that season 7 has been pretty great so far, and pretty consistent as well which is good. The asylum of the daleks episode was a fantastic opener and whilst not focusing on the daleks themselves as much as the hype suggested it did make them scary again after the ridiculousness of Dalek episodes (for example Journey's end). Dinosaurs on a spaceship was a fun episode introducing a great new character but also had some suprisingly dark moments as well. A town called mercy has split opinion some say it was the best episode of the season so far and others thought it was below par, I thought it was decent but could've been better. The power of three could've probably been a two parter, it's ending was rushed and some things were not explained but as an episode exploring Amy, Rory and the Doctor's relationship it was great. The angels take Manhattan was a great episode and a great mid-season finale and featured the return of the weeping angels which are always good for a scare, I'm looking foward to the christmas special and hopefully it will be better than the last two, I'm also curious to see how some of the internet theories about recurring themes from the episodes play out, some of them definitely seem like they will mean something and others seem a bit too subtle.

Turning now to music after quite a long break Muse (as I've said before they are one of my favourite bands) have returned with their new album the 2nd law. I have to say I wasn't impressed with the first two released songs-survival and the 2nd law-unsustainable but madness  redeemed my hope in it. For those looking for a return to old school Muse you will probably be disappointed but as an album it's a lot better than most of the trash out there and is probably better than the resistance (though I think it gets too much criticism especially with the fantastic exogenisis symphony on it). It is quite a diverse record as well, Supremacy is clearly attempting to combine aspects of classic Muse with a bond theme, Madness is very stripped down and builds up slowly (though I prefer the live version with the guitar prominent in the mix), Panic station is probably the most surprising track on the album as it is Muse doing funk and Matt ooohs and aaahs throughout, it has an another one bites the dust esque bassline, a supersition like brass section and an very catchy solo, prelude is filler orchestral stuff, survival is pure cheese, follow me is much better, a very synth heavy song (but again I prefer the live version), Animals is a lovely surprise that really shows off Matt's guitar skill, Big freeze sounds like they tried to write a U2 song but it's by no means a bad song, Chris (the bassist) suprisingly sings not one but two songs on the album apparently about his alcoholism but I think I prefer the liquid state to save me, the first of the 2nd law songs-unsustainable has flashes of a great song but I just found it a bit silly with the woman news reader talking, the 2nd law-isolated system is a decent instrumental but just doesn't compare to the exogenisis three parter on the previous album. Overall it's great to have Muse back and it's nice to see them doing their own thing but this album could be better.

Well that's it from me for now, thanks for reading.

Summer-part 2

It's hard to believe how much time has passed and that tomorrow I start back at university. It's been a bit of a mixed summer and a bit different from usual what with the time I spent working in one of the labs at uni, going away on holiday so late and the fact that the weather has been so flipping awful for the most part. That said it has  also been a great summer because I've done a lot more than usual with paintball, concerts, nights out etc.

My time in the lab went pretty well, gave me a bit of a boost in confidence in terms of my practical skills, I got some good experience and it meant I wasn't sitting at home lazing about for 3 weeks. My supervisor was very helpful and thankfully gave me clear instructions that said they really need to install air conditioning in the lab as it was unbearably hot at times.

Before we went away on holiday me and my brother went to both days of Tennants Vital which is a 2 day music festival in Northern Ireland but each day starts in the afternoon and there's no camping. I am extremely lucky because my brother also runs a fan site for it and other Northern Irish festivals and so he was able to get us two press passes which meant we not only were able to bypass the queues but we were also guaranteed access to the pit area. The first day was fantastic with the Foo Fighters playing an amazing and memorable set. The Black Keys were also awesome as were the Northern Irish band-Trucker Diablo, unfortunately I wasn't that fussed with either The Minutes or The Cribs. The second day was more of a mixed line up but was still very enjoyable. I plan to do a feature where I talk about all the bands I've seen live so look out for that.

This is me outside the pit before the gates opened 

I went to Malta with my family and it was nice to go somewhere hot and sunny after the dismal summer we've had. The apartment which we stayed in was very nice and very fancy, much better than a cramped hotel room. It was definitely more of a relaxing holiday although we did go out to the walled city of Midina one day and the capital Valletta another. There were also lots of cats about which was nice to see especially since they looked a lot healthier than those we've seen in Cyprus, by the end of the holiday we had regular visits from four different cats who obviously lived in the complex looking for food. There was also the bonus of the journey to and from Malta being a lot shorter and less stressful than that of the journey to the states last year, especially coming home.

Thanks for reading.

New Facebook group

I have thought for a while now about the fact that the Treacher Collins Facebook groups and also the popular Yahoo group/email thing are mostly populated by parents of kids who have Treacher Collins Syndrome and whilst that's great for them to share advice and talk about medical issues it results in the majority of stuff being from parents and so ironically the people who actually have TCS don't feature as much. It was only when I was talking to another member of one of the TCS Facebook groups that I realised I wasn't the only one thinking this, so I decided to make my own group, obviously people can still be members of the main groups but this group is specifically for people who have Treacher Collins Syndrome to actually be able to talk and share pictures and advice or whatever without having to wade through all the posts from parents talking about their kids as they tend to do.

So here it is:
https://www.facebook.com/groups/168099453326386/

I've set it to closed privacy so I think I may have to choose whether to admit people or not but as long as you have Treacher Collins Syndrome you are more than welcome to join, hopefully we can get enough people to make it worthwhile.