Would love to hear from anyone in the area. I know there is at least one other TOF baby in Hudds…how wierd is this…my mum goes for her legs waxed and the girl doing her legs said another of her clients had a grandson with the same condition. Spooky cos called Oliver (same as my non-TOF twin) and very similar birthdate - just a year later (Aug 06 for my twins, 07 for the other little boy).
So if that sounds familiar drop me a line! (I presume it’s true - the girl in the salon has a very over active imagination if not!!!!!!!!)
Wouls also love to hear from any others in the area, regardless of age etc…
Claire, (mum to identical twins Oliver and Harrison).
Yes we were at the Leyland Xmasdo, but if you are ignorant than i am too cos my menory is rubbish! Hee hee.
Give me a few pointers and it may come flooding back…
Our photo’s are on this website under the Xmas do heading…
Anyway, Liverpool straight dowm the M62 for us, and we live right on top of Junction 24 (as in the m.way is practically at the end of our road!)
Would love to arrange something…
Claire xx
hey, if the journey is poss in a day maybe we could take it in turns at each others houses, more comfortable than anyhere else and cheaper, whoevers hosting could cook?? what do others think?
Peter’s mum - was on M62 today and passed junction for Leigh and thought of you! Not too far away…
Kellie - where abouts in Leeds are you? I used to work in Leeds. Also, where did Skye have her op? We went to Leeds General (our local hospital small) and our consultant is Mr. Alizai. Harrison is going for the fundoplication in Aug and could be in either LGI again or maybe Jimmy’s, as Mr A. works in both.
Does anyone know of somewhere central-ish to meet up? Our house is central-ish and I am more than happy to play host, but a tad worried as (a) out house is quite small and (b) I can’t cook to save my life!!!!!!!!!!!!!!!!!! If anyone can think of a solution, and people don’t mind sitting on the floor, i am more than happy for you to come here if it means the journey is possible for everyone.
I have been trying to think of somewhere central to us all. Thought of Trafford Centre but not child friendly and no good for all sitting down for a chat.
Anyone got a brain wave?
Claire xx
Eddie and I live in Goole (the other end of the M62!) but if it was central we could try and make it too. Just racking my brains to think if there is anywhere just off the M62 we could all meet.
Skye and Harrison’s mums- we also went to the LGI. Mr Alazi did Eddie’s first op where he attempted a reconstruction but then passed us on to Mr Crabbe when it was discovered Eddie had long gap. Would be nice to meet up and compare notes on your experiences of Ward 48a and the people who look after you.
Glad so may are interested in meeting up. Not heard of the pirates place, but heard of Botany Bay - seems central??? What are facilities like?
We are on hol in early July, and H having the fundoplication early Aug, so if the meet up could be in last 2 weeks of July it would really be helpful to us.
Caroline - you must have been in LGI not long after us. Which is ward 48A? Everything seems a blur…. Oliver (non-TOF twin) and I were on the ‘transition’ ward - was that 48A? I seem to remember they were moving the ward around. H was in the Peter Congden Unit, and transferred back to local hospital after 2 weeks.
I bloody hated being in LGI, but was scared stiff of being asked to leave and leaving Harrison behind! Not anything in particular - just hated being away from home and family. Remember one nurse had literally transferred that week from our local hospital to LGI transition ward and it was like a lifeline to me. And the nurse who talked to me about pet dogs and ballet school! I laugh now but God did I need that nurse at the time! Would love to chat more about all that. I often remark that turning up at LGI late one Fri evening, day after a C Section, in emotional turmoil, was like a Freddy Kruger film set! all long dark corridors…that image will haunt me forever…........!!!!!!!!!
Must get to bed now - so much to do , so little time.
Claire xx
We were in LGI with Eddie most of May 2007. We were in Peter Congdon at that time too. Luckily I have family in Leeds so we stayed with them while he was in hospital. Hated leaving him but our only other option was to stay in one of those horrible expressing rooms! We did get to stay in the nice room next to the surgical ward for a couple of nights before we brought him home. Probably to check we could operate his pump and sham feed him properly!
Eddie had his reconstructive surgery in February this year. That’s when we stayed on 48A, it is directly opposite Peter Congdon (and next to cafe which was handy!)
Know what you mean about the corridors. They transferred Eddie from Hull in an ambulance in the middle of the night and we had to follow on later as they would not take us in the ambulance. Never thought we would find the ward and the main lifts were out of order so had to use one that was just big enough for me and Stephen and miles out of the way!
Talking of nurses, did you meet Wally on the neonatal ward? She was hilarious, talked to the babies like little adults, certainly passed the time!
Memories!!
Anyway should save all this incase we meet.
Speak soon
Hi everyone
I’m Mum to Isobel 19 months long-gap OA and TOFS. We live in Leeds and have surgeons/wards/nurses in common with quite a few of you! We’d like to join in any meet up too if you manage to arrange anything. Isobel’s having more surgery in september, so we’ll be out of action for a while,but if it was late july/august we might make it.Is botany bay a shopping centre? where is it? Hope you’re all enjoying your summer( RAINING AS I TYPE!)and that the children are all well.
Best Wishes
Joanne and Isobel
You lot sound such good craic that I feel I’m missing out because I don’t live anywhere near Huddersfield/Leeds!
Anyway, don’t know if you’ve managed to organise a time or place to get together. If you haven’t - there’s always the TOFS Annual Children’s Party in Nottingham. I know, it may not be as convenient as Botany Bay, but it would be great for you all to meet up, and for us at TOFS to meet you all - put faces to screennames and all that.
It’s on Sunday 21 September 3-5pm in St Georges Centre, Netherfield in Nottingham. Good food and entertainment for the kids so you get a chance to have a chat.
I have found my mystery TOF!!! (See initial post in this thread). Oliver (and Mum Joanne) lives in Huddersfield, very very close to my sister, and I have already spoken to Jo. Oliver has the same surgeon at Leeds, and might be having the fundo too. Birthdays are one year and a day apart exactly. Spooky!
Jo, if you’re reading this, welcome to TOFS!!! And hope to see you very soon!
Claire xx
Hi. My name is Jane and I am 37 years old. I live in Huddersfield, West Yorkshire with Richard my husband of 4 years. I was born 6 weeks premature weighing 3lb 3oz. I was transferred to Sheffield Childrens Hospital where I spent the first 4 months of my life. I have OA, and was fed by a tube into my stomach until I had the operation to join the gap using a piece of colon. The first operation to do this was when I was 20 months old. This was unfortunately unsuccessful so they tried dilation, but I needed another operation at 2 years 2 months. Since then the only problems I encounter is needing a drink with my meal, and being self conscious of my scars (would never wear a bikini).
Like most TOFS I have never met one and have only just recently found out about this site. I am very interested in meeting someone else with OA.
Looking forward to your replies.
Jane
