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

[Buggles94]

So so sorry to hear about Evie's sight. We are also regulars at GOSH for my son and always difficult to hear that things aren't improving, no cure at the moment etc.. An amazing hospital that gives so much hope but always an emotional place to go... The trip to Wicked sounds fantastic and your holiday is so close now. It sounds like you have an amazing vacation planned! Really hope you all have an absolutely wonderful time

[gjdjud]

Originally Posted by MrsSilverStar

Looks like a great day, even with the dreaded forced interaction! That green baby is a tad creepy too!

Really to sorry to read about Evie’s sight getting worse x

See more...

Thank you. Tye interaction was my worst nightmare.The baby was a big giant jelly baby

Originally Posted by GezzasGem

Sorry to hear the news - you all cope so well with everything, Evie such a trooper! Can't believe how grown up the girls are now, remember reading your earlier trip reports! Glad you had such a great time at Wicked 👌

See more...

Thank you There is nothing we can do and Evie is going to have a tough few years co,ing up as she becomes a teenager so we have to be positive

Originally Posted by Buggles94

So so sorry to hear about Evie's sight. We are also regulars at GOSH for my son and always difficult to hear that things aren't improving, no cure at the moment etc.. An amazing hospital that gives so much hope but always an emotional place to go... The trip to Wicked sounds fantastic and your holiday is so close now. It sounds like you have an amazing vacation planned! Really hope you all have an absolutely wonderful time

See more...

It really is such a fantastic hospital. All the staff have been brilliant and there is a lady who works there who is visually impaired that Evie really looks up to and looks forward to seeing ever visit. Wicked was a nice end to a busy couple if days

[gjdjud]

A little update. Building work is under way! The girls from tomorrow are going to stay with the in laws. They are only down the road. We are going to have the stress of building works, lack of bathroom, kitchen etc. Me and Kelly currently have no bed!

We aren’t far from Gatwick but we’ve decided to book the Premier Inn at Gatwick North the night before we fly. We will do twilight check in and go to the hotel from there. At least the night before we can guarantee a bed to sleep in and the use of a shower!

[caitlinsmummy]

Fingers crossed the work is over and done with fairly quickly! We always stay the night before, I just much more comfortable that way (plus Manchester is 2 1/2 hours from us haha) Not long now! Xx

[gjdjud]

Originally Posted by caitlinsmummy

Fingers crossed the work is over and done with fairly quickly! We always stay the night before, I just much more comfortable that way (plus Manchester is 2 1/2 hours from us haha) Not long now! Xx

See more...

It makes it more exciting having an extra night at the hotel the night before Work is well under way now

[caitlinsmummy]

Originally Posted by gjdjud

It makes it more exciting having an extra night at the hotel the night before Work is well under way now

See more...

It does. I feel more relaxed knowing that's it. Although I panicked last year as I forgot some stuff 😂

Fab news! Will it be done before you leave? Are you almost sorted for the trip then? Xx

[gjdjud]

Originally Posted by caitlinsmummy

It does. I feel more relaxed knowing that's it. Although I panicked last year as I forgot some stuff 😂

Fab news! Will it be done before you leave? Are you almost sorted for the trip then? Xx

See more...

No chance it will be done before we go but probably not a bad thing we are out of the way for 3 weeks. We are pretty sorted. All our stuff has been shifted to the in laws which complicates things

[Bertiebear]

Originally Posted by gjdjud

So we’ve just got back from Evie’s latest Great Ormond Street appointment. We brought this one forward over concerns her vision was gettting worse. Unfortunately that has been confirmed. Her left eye basically can only see some light now. Her right remains stable thankfully. It’s horrible to hear but it’s not really a surprise. We also finally after 3 years got our gene results back to confirm her condition is Stargardts which we’ve always suspected. Me and DW are both carriers of the defective gene so unfortunately combined it’s a one in four chance of our kids getting it. So Evie has it, Lily Belle so far shows no signs of it. On a positive they are hoping to do trials of tests on this particular faulty gene. IF this happens and it’s an incredibly big IF then it could possibly slow down or stop the deterioration. It would never cure. No timescales on these kind of medical tests. It could be years or not all.

I’m pleased it’s over for another year. Great Ormond Street is an amazing place but at the same time a heartbreaking place to be.

So onwards and upwards. We through a charity event are going to see Wicked in the West End tomorrow. We have a special touch tour of the props beforehand and we have second row seats so we are looking to that very much. The also happens to be a Shake Shack down the road so will be leading the family there for lunch

It’s also only 41 days to go!

See more...

I’ve only just caught up with this. Why did it take them so long to confirm it? We initially had my sons test at GOSH and was then transferred to Moorfields. We had our blood tests only after 6 months of suspicions. It’s so strange why it would take longer to sort out. Our daughter is showing no signs at the mo and her optic nerve looks fine. We were only at Moorfields last week. Henry’s sight went literally within a year (2014/15) but has been stable since. His left eye is the better one but they’ve said eventually it will catch up. The professor has told us there will be a cure in his lifetime but maybe not until old age. The issue is as it’s a relatively slow progressing desease the trials have to go on for years. Hope she’s getting lots of support. Henry is off to secondary this year on a bus I’m bricking it!

[gjdjud]

Originally Posted by Bertiebear

I’ve only just caught up with this. Why did it take them so long to confirm it? We initially had my sons test at GOSH and was then transferred to Moorfields. We had our blood tests only after 6 months of suspicions. It’s so strange why it would take longer to sort out. Our daughter is showing no signs at the mo and her optic nerve looks fine. We were only at Moorfields last week. Henry’s sight went literally within a year (2014/15) but has been stable since. His left eye is the better one but they’ve said eventually it will catch up. The professor has told us there will be a cure in his lifetime but maybe not until old age. The issue is as it’s a relatively slow progressing desease the trials have to go on for years. Hope she’s getting lots of support. Henry is off to secondary this year on a bus I’m bricking it!

See more...

It’s was all to do with identification of the faulty gene ABCA4. Sometimes the tests just take ages. Our consultant always said he suspected it would be Stargardts but couldn’t say until it was identified. They are going to be doing trials on this gene but who knows how long that would be. I’m not getting my hopes up.

I’m sure Henry will be fine. Evie had problems for the first couple of months but has settled in well and has made some new friends which we worried about massively.

[gjdjud]

So here is the final itinerary

Pre Travel Day May 9th

* TWILIGHT CHECK IN in Gatwick North
* Check In PREMIER INN Gatwick North
* Dinner

Day One May 10th

* VIRGIN V ROOM from 10am
* FLIGHT at 1pm
* Arrive 5pm Local time
* Car hire collection
* Check In PORT ORLEANS FRENCH QUARTER
* QSDP dinner food court

Day Two May 11th

* Arrive at MAGIC KINGDOM for 8am opening
* THE PLAZA Breakfast adr 10.25am
* Stay at MK until lunchtime
* Shopping at WALMART AND DOLLAR TREE
* Rest/Swim at POFQ
* Boat to DISNEY SPRINGS
* QSDP dinner THE POLITE PIG

Day Three May 12th

* Lily Belle 10th Birthday
* OHANA Breakfast ADR
* MAGIC KINGDOM day
* Rest/swim POFQ around 4pm
* Back to MAGIC KINGDOM
* QSDP dinner here
* HAPPILY EVER AFTER

Day Four May 13th
* early start at HOLLYWOOD STUDIOS
* TOY STORY EXTRA MORNING MAGIC
* All day at DHS
* Early dinner adr at CHEF MICKEYS
* Chilled evening at POFQ


Day 4: Tuesday May 14th
* EPCOT DAY.
* Early breakfast adr at GARDEN GRILLE
* All day here
* Back to POFQ about 4pm for a rest/swim
* Return to EPCOT
* Dinner adr at TEPPEN EDO at 7pm
* ILLUMINATIONS
* Try to ride TEST TRACK in the dark!
* EXTRA MAGIC EVENING HOURS

Day 5: Wednesday May 15th
* Day at DISNEY ANIMAL KINGDOM for 9am opening.
* Breakfast adr at TUSKER HOUSE at 10.10am.
* Head back to the RESORT for rest and a swim.
* Catch the boat to DISNEY SPRINGS for the evening.
* Dinner ADR at PLANET HOLLYWOOD

Day 6:Thursday May 16th
* Leave Disney early.
* Check in UNIVERSAL ROYAL PACIFIC RESORT by 7.30am.
* Get shuttle bus to VOLANO BAY for 9am early entry
* Stay until around 1pm.
* Into CIYWALK and lunch at either BREADBOX or HOTDOG HALL OF FAME.
* Head to UNIVERSAL STUDIOS heading straight into WWOHP.
* Spend time at both HARRY POTTER areas.
* Head to CITYWALK
* Dinner at ANTOJITOS at 8pm
* Have a look at VOODOO DONUTS

Day 7: Friday May 17th

* Head to IOA for the day.
* Evening back to CITYWALK.
* Dinner at JIMMY BUFFETS MARGARITAVILLE.

Day 8: Saturday May 18th
* Check out of room and leave bags with bell services.
* Breakfast in our hotel MINIONS CHARACTER BREAKFAST at 8am
* Head to UNIVERSAL STUDIOS for the day.
* Leave around 4pm to collect bags
* Head to ENCANTADA RESORT for about 5pm.
* Check out the resort and maybe a swim.
* Call ahead for dinner at TEXAS ROADHOUSE around 7.30pm

Day 9: Sunday May 19th
* Breakfast at PERKINS
* Head to ORLANDO PREMIUM OUTLETS AT VINELAND from 10am for SHOPPING DAY.
* Lunch at SHOPPING MALL FOOD COURT LUNCH or FORDS BURGERS located near by.
* head back for a rest and swim.
* Dinner at MANNYS CHOPHOUSE

Day 10: Monday May 20th
* Have breakfast at DENNYS by 8.45am.
* Then on to SEAWORLD for the day 10am opening.
* Spend all day here.
* Dinner directly from SEAWORLD at BETH's BURGERS or NYPD PIZZA.
* This will allow a fairly free evening at resort and pool.

Day 11: Tuesday May 21st
* Breakfast en route at KEKES
* Head to UNIVERSAL
* Stay until mid afternoon
* Then from here head to TEAK NEIGHBOORHOOD BAR AND GRILL.
* Possibly time for SHOPPING.
* Head to the MAGIC KINGDOM around 6pm for the evening.

Day 12: Wednesday May 22nd
* Evie's 12th birthday.
* VILLAGE INN for breakfast
* Then to AQUATICA for the day.
* Spend the day until about 4pm.
* Then from here out for early dinner for Evie's birthday at THE CHEESECAKE FACTORY.
* Spend some time SHOPPING at the MALL OF MILLENIA.

Day 13: Thursday May 23rd
* Up early for drive to CLEARWATER BEACH.
* Check in at the SANDPEARL. Aiming for around 8.30-9am.
* Head next door to CLEARSKY CAFE for late breakfast.
* Spend the day relaxing on the beach and by the pool.
* Dinner at FRENCHYS ROCKAWAY GRILL.
* Try to get to PIER 60 for SUNSET FESTIVAL.

Day 14:Friday May 24th
* Breakfast somewhere.
* Drive to BUSCH GARDENS for 10am opening.
* SERENGETI SAFARI at 11.30am
* Spend the whole day here before heading back to Orlando.
* Dinner on way back somewhere like MILLERS or ON THE BORDER.

Day 15:Saturday May 25th
* A late start after a lie in.
* Breakfast somewhere
* Head to DISNEY HOLLYWOOD STUDIOS around 1pm.
* 50’s PRIME TIME CAFE 7PM
* FANTASMIC at 9pm.

Day 16:Sunday May 26th
* Head to ANIMAL KINGDOM LODGE at BOMA for late breakfast at 10.45am
* Head to ANIMAL KINGDOM
* Dinner at YAK AND YETI at 6.30pm
* RIVERS OF LIGHT at 9pm

Day 17:Monday May 27th Memorial Day
* Up early to arrive at DISCOVERY COVE for 7am.
* From here head directly to THE SUGAR FACTORY at 6pm
* From there if we like pop into DISNEY SPRINGS.

Day 18: Tuesday May 28th
* Breakfast en route to Universal possibly FIRST WATCH.
* Head to UNIVERSAL and spend the day gong between both parks.
* Have lunch at BREAD BOX or PANDA EXPRESS when passing between the parks.
* Stay here as long as possible possibly dinner somewhere at Citywalk possibly TOOTHSOME.

Day 19: Wednesday May 29th
* Breakfast en route at CRACKER BARREL
* Head to TYPHOON LAGOON for 10am opening.
* From here possibly shops
* Then drive to BEACH CLUB by 4pm
* ADR at BEACHES AND CREAM at 4.30pm.
* From here head to EPCOT WORLD SHOWCASE for the rest of the evening.

Day 20: Thursday May 30th
* Breakfast at 1900 PARK FARE at 8.15am
* Then head to the MAGIC KINGDOM until early afternoon.
* From there any last minute SHOPPING
* Finish of packing and a swim.
* Last final meal out at LONGHORN.

Day 21: Friday May 31st
* Up early to get to DISNEY SPRINGS VIRGIN CHECK IN FROM 8.15am
* From here head straight to ANIMAL KINGDOM.
* Lunch at RAINFOREST CAFE.
* Back to ENCANTADA for final swim and a sort.
* Leave for the airport around 3.45pm
* Flight departing 7.50pm.

Day 22: Saturday June 1st
* Arrive UK at 9.05am Gatwick North.