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Re: Bipin's surgery

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Hi tessa its clare (and emy from hertford), thank you so much for letting us know, it was lovely to meet the three of you the other week. you are absolutely right bipin is adorable and very unique - i dont think he will ever loose this. i remember having exactly the same feelings and story to tell when emy went through her operations, thank you for sharing, it always helps others to understand, and not feel alone. We are know 7 years on, emy is 11 and as you saw as unique and adorable as bipin. we soon forget and just get used to what is around us. So well done all 3 of you, and we are really pleased everything went well. Love to you all clare and emy - hertfordshire UKtessa_mackenzie <tessamackenzie@...> wrote: Hello, When the UK BPES gang met up last Sunday (great to meet you all!) I promised I would let you know how Bipin's first surgery went and I'm only just getting round to it, sorry! I've had a hectic few days at work, but mostly it was because I didn't feel too much like writing last week. The op went ahead and everything is fine now, and Bipin is on fine form, but it took Jakesh and I a few days to get over the whole thing!We had almost assumed that it wouldn't happen because Bipin had a bit of a cough, but the anaesthetist said he was fine and then everything moved quite fast, which left us feeling a bit

powerless. Having him go under the anaesthetic was upsetting and then when he came out he yelled and yelled and looked very swollen and one eye looked much bigger than the other. By this time I was a wreck. Once he had slept off the anaesthetic he was fine, still tired and a bit clingy but fine and very hungry. And by day 3 the swelling had gone down almost completely and he was learning to use the muscles round his eyes and it's now not nearly as noticeable that one eye is bigger than the other. I suppose it has also been a matter of us getting used to his 'new look'.We had his follow-up appointment today and all seems fine and hopefully he won't need any more surgery, and his eyesight should be able to develop a lot better. He'll have regular check ups.So we're now happy that we made the right decision, and it's true that his eyes look more like other people's, although we like to think that he hasn't

lost any of his uniqueness! I'll post some photos up as soon as I get a chance.I hope it's alright that I've been quite open about how difficult it was - I don't mean to scare anyone. I suppose what I found most difficult was that the decision to put him through surgery needed to be ours and not the doctors. In his case it was recommended but not a case of him not being able to see without it. And he is so young and vulnerable! Anyway, as I said, we're now happy that we did the right thing.Best wishes to all, and good luck to everyone else that is taking decisions about surgery and going through it!Tessa

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Hello Tessa & Jakesh

Good to hear from you guys.

I'm glad Bipin is alright. I was wondering if he had the surgery or not and I can totally relate to how you felt after it all.

It was lovely seeing you guys

Take care God bless

Joyce

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Hi Tessa

It was really nice to meet up and put faces to names. Glad you

survived the surgery experience. Although Todd hasn't had any surgery

for BPES our big two boys have both had non-essential operations, and

it is heart wrenching. But glad it all went well amd look forward to

meeting again??

Best wishes

Caroline, Neil & Todd

England

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Hello to you all So glad to hear everything went well for you, I was thinking of you all on the day of surgery. I can understand completely on everything you went through, it is heart wrenching but the bonuses after the operation is so huge it is worth going through it. I even believe that even though Holly is only 20 months old she loves her new eyes too. It is just little things like seeing birds flying overhead and pointing to them which she never did before. She is also pointing at our eyes and also her own as if she understands they are now bigger. Another point which may help is that after the operation even though they seem distressed they will not remember any of it because a lot of their reactions are due to the anaesthetic. That is why after they have slept off the anaesthetic they are acting as if nothing has happened, after food that

is!!! Take care of yourselves and look forward to seeing the photos. Which reminds me we need to put the photos of Holly on here too!! Love Lucy, Garry and Holly - Hampshire, UK. tessa_mackenzie <tessamackenzie@...> wrote: Hello, When the UK BPES gang met up last Sunday (great to meet you all!) I promised I would let you know how Bipin's first surgery went and I'm only just getting round to it,

sorry! I've had a hectic few days at work, but mostly it was because I didn't feel too much like writing last week. The op went ahead and everything is fine now, and Bipin is on fine form, but it took Jakesh and I a few days to get over the whole thing!We had almost assumed that it wouldn't happen because Bipin had a bit of a cough, but the anaesthetist said he was fine and then everything moved quite fast, which left us feeling a bit powerless. Having him go under the anaesthetic was upsetting and then when he came out he yelled and yelled and looked very swollen and one eye looked much bigger than the other. By this time I was a wreck. Once he had slept off the anaesthetic he was fine, still tired and a bit clingy but fine and very hungry. And by day 3 the swelling had gone down almost completely and he was learning to use the muscles round his eyes and it's now not nearly as noticeable that one eye is

bigger than the other. I suppose it has also been a matter of us getting used to his 'new look'.We had his follow-up appointment today and all seems fine and hopefully he won't need any more surgery, and his eyesight should be able to develop a lot better. He'll have regular check ups.So we're now happy that we made the right decision, and it's true that his eyes look more like other people's, although we like to think that he hasn't lost any of his uniqueness! I'll post some photos up as soon as I get a chance.I hope it's alright that I've been quite open about how difficult it was - I don't mean to scare anyone. I suppose what I found most difficult was that the decision to put him through surgery needed to be ours and not the doctors. In his case it was recommended but not a case of him not being able to see without it. And he is so young and vulnerable! Anyway, as I said, we're now happy that we did

the right thing.Best wishes to all, and good luck to everyone else that is taking decisions about surgery and going through it!Tessa

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