HEY MICKEY YOU'RE SO FINE,YOU'RE SO FINE YOU BLOW MY..MONEY. MAY 2019 onsite/offsite Pre Trip Report

[Goldia]

Well done on the diet. I'm back on the wagon too, after Easter! Keep going!

[halloweenbaby2]

All sounding great so far, looking forward to reading your updates.

[O adventurez]

Fab pre trippie! Will have a look over your previous ones. I’m thinking of doing a split stay so looking forward to seeing how you get on!

[Bertiebear]

Sounds like a brilliant trip.

How long did it take for a confirmed diagnoses of stargartds for Evie? It’s what my ds has and they suggested then confirmed it as soon as we’d had the blood tests. Our dd isn’t showing any signs at the moment and we don’t really want to put her through having a blood test so seeing how she goes. Is your other daughter ok? I can’t find our original messages that I’d sent you, maybe last year, or year before? Sounds like she is coping really well. My ds isn’t at Braille stage, but he reads in font 36, has a 1:1 at school and various equipment. He has an amazing thing called a prodigi by Humanware. Purchased through this ehcp for school. They do a Braille version which looks amazing.

[gjdjud]

Originally Posted by Floridafour

Lovely 😊
I’m so pleased you all have another trip to look forward to. I always enjoy your trip reports, we have 2 daughters so on the same page so to speak. Your girls are beautiful & growing up fast ! 🙂

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Thank you. Growing up to fast.

Originally Posted by Goldia

Well done on the diet. I'm back on the wagon too, after Easter! Keep going!

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Easter is the he hard part. I meant to start a couple of weeks before but was pointless.

Originally Posted by halloweenbaby2

All sounding great so far, looking forward to reading your updates.

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Thanks for reading

Originally Posted by O adventurez

Fab pre trippie! Will have a look over your previous ones. I’m thinking of doing a split stay so looking forward to seeing how you get on!

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Thank you for reading Hope you find it useful.

[gjdjud]

Originally Posted by Bertiebear

Sounds like a brilliant trip.

How long did it take for a confirmed diagnoses of stargartds for Evie? It’s what my ds has and they suggested then confirmed it as soon as we’d had the blood tests. Our dd isn’t showing any signs at the moment and we don’t really want to put her through having a blood test so seeing how she goes. Is your other daughter ok? I can’t find our original messages that I’d sent you, maybe last year, or year before? Sounds like she is coping really well. My ds isn’t at Braille stage, but he reads in font 36, has a 1:1 at school and various equipment. He has an amazing thing called a prodigi by Humanware. Purchased through this ehcp for school. They do a Braille version which looks amazing.

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Hi ,

Evie was originally diagnosed with cone dystrophy which is a generic term covering lots of eye diseases, we had blood taken nearly 2yrs ago for geneome project but still awaiting results. Our consultant at Great Ormond Street is fantastic and is 99.9% sure it's stargartds from the way it's presented,(which DW Kelly initially thought when she researched when Evie first started losing vision). But he said it's A Typical stargardts ,(as it a so rare, as it's also affected her perphiral vision too, where it's normally just central vision.) To be honest the official diagnoses isn't worth much to us. Evie lost her vision and thats that really, no matter what they call it .

Kids are amazing and adapt and cope amazingly well, it's a learning curve for parents and family though . But as a family we laugh and joke as our way of lightening it up and keeping it normal for her and our other daughter .

The hardest part was taking her out of her much loved school in yr 5 and moving her to a main stream school with trained TA, she felt ripped from her friends etc, but after only a term in she loves it and now she getting ready to do her sats(predicted above National Average all over) and go to secondary a much more confident and independent young lady. She had to learn Braille as couldn't access print at all anymore and with 6months had over achieved, in learning up to grade 2 and is now just a Braille user. It's just what it is and now is the norm for us.

Please feel free to ask any other questions.

[Kat22]

I love your trip reports, they really make me laugh!
We are also going again in may 2019. Have a good deal with virgin holidays as well. Your trip title ressonated with me, my goodness it’s eye wateringly expensive! My non-Disney friends think I am crazy! We wanted to go to WL for 9 nights followed by HRH (club level- had to be done!) for 7 nights. 15-31st may. As WL not yet released we’ll book AKL and hopefully swap. Got a quote yesterday but have had a restless night worrying about taking the kids out of school for 8 days. I also have another quote for exactly the same leaving on the 17th, so they will only have 6 days off. My kids have 100% attendance and are bright, conscientious little things but it doesn’t sit well with me.
It’s the only time we will take them out but still stressing!

I’m so glad to hear your daughter is loving her new school.

[Bertiebear]

Originally Posted by gjdjud

Hi ,

Evie was originally diagnosed with cone dystrophy which is a generic term covering lots of eye diseases, we had blood taken nearly 2yrs ago for geneome project but still awaiting results. Our consultant at Great Ormond Street is fantastic and is 99.9% sure it's stargartds from the way it's presented,(which DW Kelly initially thought when she researched when Evie first started losing vision). But he said it's A Typical stargardts ,(as it a so rare, as it's also affected her perphiral vision too, where it's normally just central vision.) To be honest the official diagnoses isn't worth much to us. Evie lost her vision and thats that really, no matter what they call it .

Kids are amazing and adapt and cope amazingly well, it's a learning curve for parents and family though . But as a family we laugh and joke as our way of lightening it up and keeping it normal for her and our other daughter .

The hardest part was taking her out of her much loved school in yr 5 and moving her to a main stream school with trained TA, she felt ripped from her friends etc, but after only a term in she loves it and now she getting ready to do her sats(predicted above National Average all over) and go to secondary a much more confident and independent young lady. She had to learn Braille as couldn't access print at all anymore and with 6months had over achieved, in learning up to grade 2 and is now just a Braille user. It's just what it is and now is the norm for us.

Please feel free to ask any other questions.

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Sounds like she’s excelling in school which is brilliant. My ds is going into year 6 September and I’ve now got the task of finding the best senior school. Great Ormond Street is a brilliant hopsital. He had his initial tests there and now he goes to a Moorfields. He’s stable at the moment but never know wether it’s going to deteriorate more. Looking forward to reading your report.

[gjdjud]

Originally Posted by Kat22

I love your trip reports, they really make me laugh!
We are also going again in may 2019. Have a good deal with virgin holidays as well. Your trip title ressonated with me, my goodness it’s eye wateringly expensive! My non-Disney friends think I am crazy! We wanted to go to WL for 9 nights followed by HRH (club level- had to be done!) for 7 nights. 15-31st may. As WL not yet released we’ll book AKL and hopefully swap. Got a quote yesterday but have had a restless night worrying about taking the kids out of school for 8 days. I also have another quote for exactly the same leaving on the 17th, so they will only have 6 days off. My kids have 100% attendance and are bright, conscientious little things but it doesn’t sit well with me.
It’s the only time we will take them out but still stressing!

I’m so glad to hear your daughter is loving her new school.

See more...

Thanks for reading. Always nice to hear from people going at the same time

[gjdjud]

Originally Posted by Bertiebear

Sounds like she’s excelling in school which is brilliant. My ds is going into year 6 September and I’ve now got the task of finding the best senior school. Great Ormond Street is a brilliant hopsital. He had his initial tests there and now he goes to a Moorfields. He’s stable at the moment but never know wether it’s going to deteriorate more. Looking forward to reading your report.

See more...

You just never know when it could get worse thats why we make these trips.