Mums Blog

Hello and welcome to my blog! I hope to be able to keep you up to date with various things on here – Amelie’s progress, appointments and operations etc. Thank you for checking in and keeping in touch with Amelie’s life! xx

The Child Growth Foundation Convention

      On Saturday 5th November we lucky enough to attend the CHILD GROWTH FOUNDATION convention which was held at The Hilton Hotel in Northampton (thanks to our supportive fundraisers!) We went as a family quite excited to meet some other English families with children with RSS. The day started at 9am in the…

read more
TRIP TO SOUTHAMPTON!

Yet another hospital appointment – this time a bit further afield! Amelie’s appointment was to see Professor Karen Temple at Southampton University hospital on Tuesday 18th October. This was a ‘research’ appointment which would help both of us really – to document Amelie’s symptoms to maybe help other children and for us to pick her…

read more
AMELIE’S EVENTFUL TRIP TO MANCHESTER CHILDREN’S HOSPITAL!

This little ‘visit’ to Manchester Children’s Hospital was arranged by Amelie’s new Endocrinology team for Friday 30th September. The purpose was to carry out several tests to investigate whether or not Amelie was producing a ‘normal’ level of Growth Hormone prior to her possibly starting Growth Hormone treatment next year. They were also going to…

read more
Amelie’s Home!!

Amelie has been a little superstar this week – she endured a very long operation, boughts of bad pain, drips, drains, needles and all sorts – but has managed a little smile nearly every day! She has amazed the doctors with her lack of fear and her ability to recover so well! It’s been a…

read more
Amelie’s next operation

Just a quickie to let you know that my brave little girl will be admitted tomorrow to Leeds General Infirmary, for surgery on Monday morning. She’s having a permanent jejunostomy, repair of a hiatus hernia and a re-do of the Nissens procedure. You’ll have to google that – not much time to explain! All packed…

read more
AMELIE’S FIRST DAY AT SCHOOL!

After everything she’s been through Amelie achieved a major milestone today and started school! She looked so grown up in her school uniform – all especially made for her by the company who provides uniform to our school! The teachers, although understandably cautious, managed brilliantly with her feeds, meds and nappies etc!!! She had a…

read more
Happy Birthday AMELIE!!!!

It was Amelie’s 4th birthday on Tuesday 16th August and we threw her a party at home with some of her friends and she had the most FANTASTIC time! We arranged a special treat for her – Cinderella and Prince Charming came to entertain the kids!!! They were from ‘Make a Wish Entertainment’ in Horbury,…

read more
Appointment with Endo in Manchester

Went to see a Paediatric Endocrinologist at Manchester Children’s Hospital on Monday (15th)! Took a while but managed to get across our plight to find someone to take on the challenge which is Amelie Jayne!! They are going to speak with the spinal surgeons and look at her x-rays and scans to see if they…

read more
SURPRISE TRIP TO DISNEY, FLORIDA!

After weeks, maybe months of secret planning – the girls found out about their surprise trip to Disney Land in Florida!!! Thanks to the documentary team flying us out to Chicago, we were able to get some cheap internal flights down south to the place we’d only ever dreamed that we could take the girls!…

read more
OUR Trip TO CHICAGO!!!

At 4am on Wednesday 13th July we set off to Heathrow airport to catch a plane to Chicago. 15hrs later we arrived – a bit tired but very excited! We settled into our hotel room and quickly found the swimming pool for the girls!!! I can’t go into too much detail as it will spoil…

read more