October
October was a very busy month and we havent really stoppped since!!
We started the month with the most magical trip to disneyland Paris. There are no words to describe just how fantastic it was.
We travelled by Eurostar and stayed for 2 nights in the disney New York hotel at Disneyland Paris.
Instead of me waffling on here are just a few pics of our magical time.
What I would like to say though.... a MASSIVE thumbs up to Virgin trains, the wonderful assistance teams at Peterborough, Kings cross, St Pancreas and Disney stations, Eurostar, Disneyland Paris Cast members, hotel staff and the guys at Siverspoon steakhouse and Billybobs where we had dinner. THANK YOU!!! Each and everyone of them went above and beyond to making a very special, stress free trip of a life time for our little princess and prince. Making dreams come true.
We started the month with the most magical trip to disneyland Paris. There are no words to describe just how fantastic it was.
We travelled by Eurostar and stayed for 2 nights in the disney New York hotel at Disneyland Paris.
Instead of me waffling on here are just a few pics of our magical time.
What I would like to say though.... a MASSIVE thumbs up to Virgin trains, the wonderful assistance teams at Peterborough, Kings cross, St Pancreas and Disney stations, Eurostar, Disneyland Paris Cast members, hotel staff and the guys at Siverspoon steakhouse and Billybobs where we had dinner. THANK YOU!!! Each and everyone of them went above and beyond to making a very special, stress free trip of a life time for our little princess and prince. Making dreams come true.
Let the magic begin
Its time to go...
The hotel
Birthday suprise
VIP breakfast at the Empire state room
The parks
Mad Hatter's tea party
Meeting Mickey and Minnie
Meeting Jack skellington
Meeting Cinderella
A very sleepy journey home
Maya's 4th Birthday
Maya had very special birthday celebrations at Alphabet day nursery, Whittlesey with all her friends with a very special guest - Elsa!! Usually we do not do a party for Maya because the change and excitment is just too much for her and makes her quite poorly with big seizures. This year with the incredible support of Maya's nursery and the wonderful people at partyguests-lookalikes Maya had her first ever mini birthday party with all her friends. A magical birthday! Here are some photos:
'Frozen' cake
Chocolate Princess castle cake
Eye surgery
On the 13th October (Yes the day after her 4th birthday!) Maya underwent surgery to correct her squint. The Surgery was completed at Pecter City hospital Under Mr Vardy and the wonderful nursing team at Amazon ward.
The surgery was completed as a day case operation and although after a bit of a shaky start with double vision (in Maya's words 'Mummy I'm an octopus!' followed by a bit of an infection and some deterioration in her vision. After her 6 week check the surgery was a success and has greatly improved Maya's eyes both cosmetically and her vision. Maya just needs to have a few follow up appointments to check the progress and strength in her eye muscles.
Some before and after photos will be added soon :-)
The surgery was completed as a day case operation and although after a bit of a shaky start with double vision (in Maya's words 'Mummy I'm an octopus!' followed by a bit of an infection and some deterioration in her vision. After her 6 week check the surgery was a success and has greatly improved Maya's eyes both cosmetically and her vision. Maya just needs to have a few follow up appointments to check the progress and strength in her eye muscles.
Some before and after photos will be added soon :-)
Orthopadic Appointment
On the 19th October we met with Maya;'s Orthopaedic surgeon Mr Mitchell for the first time at Peterborough Hospital. Unfortunately Mr Mitchell confirmed my fears that Maya's hips weren't developing properally and although our best effort to get her standing and walking to stengthen her hips its just not been enough. Maya has bilateral hip dysplasia with a severe migration of the femoral (thigh bone) from the pelvis (socket bit). Mr Mitchell and al lthe orthopaedic team are shocked how well Maya has prtogressed in terms of her development, standing and walking and can not believe their eyes! She physically should not be able to do what she is doing. Unfortunately this also means that in terms of Maya's sensation and Pain in her legs, they do not believe there is any nerve supply to this area as it should be agony for her.
After a long discussion the surgery is required to try an reach an optimal position for Maya hips whilst in her wheelchair. If her hips are left untreated and continue the way they are she will develop very diformed hip area, she will develop severe pressure sores on her bottom and leg area from the bone protruding further and further out and would require months of bed rest, positional changes and pressure sore care. She will likely develop severe scoliosis (curvature of the spine in to an S-shape) as the spine tries to accommodate the hip position. This would require major spinal surgery later on in life as the curve may cause strain on her vital organs.
However there are some concerns that the surgery will cause a big regression in mayas ability. From been in cast she is likey to loose all muscle strength and movement in her legs due to muscle wastage. This occurs in all children placed in cast but due to Mayas spina bifida she may never regain this strength. This may also occur to her core strength too. Due to the positioning of her cast she will probably be unable to crawl or use her wheelchair whilst casted which is also likely to have a big effect on her upper body strength. There may also be complication with her eating and drinking, bowel and bladder function and her circulation. We have been tolfd by her surgeon to be prepared for a very long recovery and that she may never stand or walk again and that She may be unable to sit unaided, roll or crawl.
After a very tough appointment ending in tears and lots of worry we have decided to go ahead with surgery which will be bilateral (both sides) hip reconstruction (make a new hip joint) with femoral and pelvic osteotomies (moving and using the thigh bone and pelvic bone). She will then be in a hip spcia cast for a minimum of 6 weeks. She will then be xrayed to see if the surgery was a success and a decion will be made if she needs further surgery, further casting or possibly a brace to support her development. The surgery will be completed by 2 surgeons Mr Mitchell and Mr Latimer at Peterborough hospital. She will likely need a blood transfusion. The surgery is likely to take place mid November.
After a long discussion the surgery is required to try an reach an optimal position for Maya hips whilst in her wheelchair. If her hips are left untreated and continue the way they are she will develop very diformed hip area, she will develop severe pressure sores on her bottom and leg area from the bone protruding further and further out and would require months of bed rest, positional changes and pressure sore care. She will likely develop severe scoliosis (curvature of the spine in to an S-shape) as the spine tries to accommodate the hip position. This would require major spinal surgery later on in life as the curve may cause strain on her vital organs.
However there are some concerns that the surgery will cause a big regression in mayas ability. From been in cast she is likey to loose all muscle strength and movement in her legs due to muscle wastage. This occurs in all children placed in cast but due to Mayas spina bifida she may never regain this strength. This may also occur to her core strength too. Due to the positioning of her cast she will probably be unable to crawl or use her wheelchair whilst casted which is also likely to have a big effect on her upper body strength. There may also be complication with her eating and drinking, bowel and bladder function and her circulation. We have been tolfd by her surgeon to be prepared for a very long recovery and that she may never stand or walk again and that She may be unable to sit unaided, roll or crawl.
After a very tough appointment ending in tears and lots of worry we have decided to go ahead with surgery which will be bilateral (both sides) hip reconstruction (make a new hip joint) with femoral and pelvic osteotomies (moving and using the thigh bone and pelvic bone). She will then be in a hip spcia cast for a minimum of 6 weeks. She will then be xrayed to see if the surgery was a success and a decion will be made if she needs further surgery, further casting or possibly a brace to support her development. The surgery will be completed by 2 surgeons Mr Mitchell and Mr Latimer at Peterborough hospital. She will likely need a blood transfusion. The surgery is likely to take place mid November.