Merry christmas...

i just wanted to wish everyone a Merry christmas! i hope everyone has a lovely time!
i was hoping to go to my friends house tonight but full of cold and my ear infection is back  in right non cochlear ear :(
anyway everyone have a lovely xmas!

Day after eyelid adustment...

i had trouble closing my eye at first so i was worried if i would sleep! but i acutally got the best sleep id had in ages! it also helped getting up at 5am the previous day!

i woke up to a sore eye again so i took some more paracetamol this morning. it hurts to blink wholey with all of the eyelid because the eyebrow is sore too. but paracetamol is helping! I was talking with my mum this morning and she told me that my eye surgeon had seen more of me as a brow suspension patient than any other because normally he just does one adjustment.  WIth me hes done both brow suspensions on both eyeiids and adjustments on both too. it made me think how bad must my eyes have been and how weak my eyelids must have been. it upset me a little.

 
on the right- a pic of my eye as it is at the moment.

left eyelid adjustment...

Yesterday was ONE LONG DAY! we had to get up at 5am to drive to newcastle for 8:30am. I didnt particulary have a good nights sleep the night before even though i want to bed around 9pm ( which is rare for me!!) so its no surprise i got up feeling totally shattered and not feeling the best! I didnt have any breakfast since i thought i would be sick in the car! but i had my feed through the night so I was ok to miss breakfast. It was bloody freezing in the car too being 5am!

I made it to newcastle without being sick woo! We waited about half hour for the doc to see us. I still had a horrible looking sore scar on my eyelid from when he operated the brow suspension, he told us that it would be fine and doesnt need anything doing to it and it will heal on its own .I was also told i would be going to theatre at half 10 as he had moved us up the list because an adjustment doesnt take that long and we had to drive back home.

 Me and dad went down to theatre with me to hold my hand (mum never comes to theatre with me coz shes scared of needles ha!)  i must admit ive gotten used to locals after having them stabbed in my eyellid and in my head! it kills but not for long! i didnt expect anything from this as it was just an adjustment but i was a little worried as my scar on the eyelid hadnt healed and was still sore. I was right! it did hurt a bit but it was nothing compared to when he did the left eye brow suspension!! At least they were kind about my concerns about my cochlear implant in theatre. Some docs n nurses are not so friendly about that and just want to get on with the job which annoys me.

I was a bit concerned when he put a patch on my eye because i didnt have one on my right eye the last time! but he said he was happy with how it went and i was to take my patch off after 2 hrs or so. i left it til i got home from newcastle.
The patch was to apply pressure and keep the eyelid shut to avoid bruising. I had some paracetamol as soon as i got home because i was in some pain.

2nd op update...

Well, it's been over a week now since the 2nd op and its certainly been harder to get used to my eyes this time round. What with the left one had been very swollen and half closed half the time and my right one wide open! My left eyelid is just starting to open up a bit now but there is still swelling it so it will take a week or 2 to open up a bit more hopefully as im not keen on having another adjustment even if they are simpler than the original op but it just means another trip to Newcastle which is annoying! Ive sent a photo to my surgeon on Friday to let him know how it is getting on but he has not got back to me yet.The right one is feeling better than the left but now and again it feels strained which is a pain!
Every night so far it has been a bit hard to sleep as it feels weird to close my left eye. Sometimes when i closed it, as ive been trying to keep it open most of the day, when i keep it shut, it sort of opens back up again!! I think its just about managed to stop doing that now!
What im hating is the constant watering of my eyes each morning! Im sick of it! it really makes my eyes sore and i have to scrunch them for a bit it takes a bit of time to get them to stop watering. im hoping it will stop soon! im happy with how my right eye looks like now and it's looking promising for my left! (hope i havent iinxed it!) but it will take another 2 weeks or nore before it settles down all togerher!
Today i had one hell of a headache due to my tiredness as ive not been sleeping very well because the watering and the way ive had to be keeping my eyes open so ive been taking paracetamol for that but im trying not to over do it! i dont take it unless i need it!
Apart from all that looking forward to christmas! :D

more swelling...

Today after a good nights sleep in my own bed and some painkillers, i woke up to more of a black eye and swellling! its not painful unless u touch it.

2nd eyebrow suspension part 2,,,

13th november,  i didnt have a good night sleep so i spent most of the night watching TV or walking about to keep my muscles moving. I had JUST drifted off about 6am but 10 mins later, the nurse woke me up to do my blood pressure!!! ohh i woke up with a headache so i had some paracetamol.

The doc came round just after my parents arrived at 8.30am. He told us what to expect and how the operation went well.  He took off my patch to reveal a black eye and lots of swellling. it was worse than the last op as that eye had more done to it. He checked my right eye too and was happy with it.

he told us the swelling would get worse as time goes on before it goes down and he couldnt determine what it would the eye would be like til it had gone down. After that, we were free to go home and i could recover.

2nd eyebrow suspension part 1...

Off we go again! on 11th november we travelled up Newcastle yet again for my 2nd eyebrow suspension on the left eyelid  and the adustment on my right eyelid. We went to the hosptial first to have a catch up as usual with the mito doc! She did the usual tests and weighed me. i was pleased to know my weight had gone up to just over 8st woop! She also told me about the facebook group they were thinking of doing for mito patients and asked if id like to have a part in it along with another mito patient so we could raise more awareness of mitochondrial condiitons or just simply to help the ones that have the conditons so they can confer with people who have the same problems. i jumped at the chance as its something to do at home and keep busy with She also suggested some physio to help me with my moving about more. She told me she would let me know later in time.

on the 12th, we awoke at our Premier inn hotel at 7am!! as me and my parents had to be at the hospital for 8 30am. i had a better nights sleep than lhe last time i was at newcastle. We made our way to the hospital and went on to ward 20 where we were in a new part of the building. i was impressed and the nurses were lovely.
i was given my hopsital ID bracelet and medical notes taken, then the nurse put some numbing cream all over my top forehead for the locals. (i really dont like feeling locals!) then it was a waiting game!

at 11am i was wheeled to theatre and had stinging locals all over my forehead and some ieft eyelid (yes it killed!) it hurt more than last time as i had different numbing cream on.

When i was in the process of having the operation, the doc had a complication with the left eyelid and where the stye had used to be, it had left some scarring so he had to work around that but in the same time some of the things that were done were horrendous!! call me a baby but it felt like he was squeezing my eyeball again!! but i did it and got through it! it took longer than normal. he then moved on to my right eye for the adjustment which wasnt as bad as what i just went through!!

The doc patched me up with a tight eye patch to keep the pressure on it and would see me in the morning to take it off.

2 weeks on from brow op...

My eyebrow op has gone well, any bruisnig or swelling i had  went down quite quickly which I was surprised with! My eye seems more open that my other but I still think it could be more open and just over the pupil but my doc can adjust that by 1mm if needs be in the next operation in November. Im quite pleased with it. I still have a stitch in my head but the ones on the eyelid have dissolved.  I have had no double vision since! I had a bit of trying to look at things more closely after the first few days but that has now settled. i was surprised at how I didnt really have much pain and any pain i had was helped by paracetamol.  My eyebrow was frozen for about a week and a half so my eyebrow woudlnt move if i tried and it was lower that my other one but its all gone back to normal now.

The stye eye that was drained is still a little bruised but i can tell the difference between how open my other eye is now.  im very pleased with it and hope the other op in november goes well too!

Removing of a stye...

I woke this monring dreading this! Id been up most of the night what with my feed going all over my bloody bed again! Mum called today for tubes that have no medicene port and just a port where i connect to my feed because the feed going all over my bed has  happened too many times before!  and i cant sleep in it! So from what the nutritian centre said that they should be able to send some one port tubes! WOO HOO! no more feed over my bed!
Back to my stye! i got up at 8am having been awake most of the night sleeping on a towel, and went off to the local hospital to have the stye drained. The stye has to be drained because with the next upcoming brow suspension op, i need to be rid of it by then. If i still had the stye, the doc wouldnt do the operation because f risk of infection so it would have been a wasted journey!
So we told the nurse this stye needs to come out ASAP! she said there was a waiting list for it though AFTER the op which was no good!!!  Then a senior nurse came in and said "I can do now it uf want" we took her up on it because we wanted it out as early as poss so it can heal.

She sat e down in a dentist like chair and put a local in my eyelid which stung and pretty much made my eyelid trickle with blood... she then put some kinda clamp on my eyelid to turn it inside out which was painfully uncomfortable!!! it felt like it was squeezing my eyeball!! she drained the cyst (stye) out and put a bandage on it. after a check up on it after 5 mins and a new bandage to take off after 2 hrs,  i was free to go home. By the time i got home and 2 hrs later, i took the bandage off and it was sooooo bruised and swollen it;s unbeleivable! i couldnt even open it for some time! Hopefully it will heal in time for the opteration  in November. :)  For now i have to put antibiotic drops in for 4 days and see how it goes! Wish me luck!

Bruising from brow suspension...

11th oct-  my eyelid has swelled up a bit and theres a bit of bruising. it feels a bit stiff to blink but its ok and no pain.
My parents say they can see a difference between my right aye and my left eye.