Bye Bye Summer, Hello Winter!

I can’t quite believe we are in the fifth week back to school after the summer holidays!! That went so quickly!!

I’ll rewind to my last post of 5th August and try and re-live the summer again!! Most of the following week was spent ordering and collecting form chemists, health centres and receiving  from various companies – all of Amelie’s supplies, then trying to fit it all in to the trunks we were given! I had to ask for one more, last minute as we didn’t have enough room! You don’t realise just  much you actually use and need as it’s usually squirreled away in different places in our home!

But we managed and set off on 15th August, while celebrating Abby & Ethan’s 11th Birthdays – always a bitter sweet day. We had a lovely meal with Nanna and William before we went, stocking up on lots of Yorkshire Puds!!

We arrived safely and had some great help from the Spanish accessibility team – got our 5 suitcases, three trunks and hand luggage packed into the mini bus and headed to our hotel. We had a lovely welcome when we got there!! All of the girls friends from last year had waited up and were a fabulous help with all of our luggage!

The staff at Los Amigos excelled themselves again and decorated the room for Abby & Amelie’s birthdays and left a bottle of champagne for our wedding anniversary!! There was even a lovely cake and a present and card each for the girls!!

It was a very late night (2.30am!!) – unpacking, getting the girls to settle and sleep  and then finding all of Amelie’s birthday presents we had taken  to leave out for her the following morning!

Amelie had a lovely birthday and got lots of presents! We went out for a meal with all our friends that night and had a perfect start to our holiday! Here are some pictures of our time in Spain at Los Amigos Beach Club! Thanks to all of you who made it such a great time – it was JUST what we needed after a tough year and long spells in hospital – some quality family time and NO HOSPITALS!!

While we were there I had a call about Amelie’s blood results – her nutritional screen had come back normal (which we had expected) and so the consultant made the decision that PN (Parenteral Nutrition – extra calories) was not needed. Even though I know this treatment comes with serious risks – I was disappointed to know they could no longer help and Amelie would just have to carry on not being able to do as much as others without running out of energy.

I put it to one side and went on to have a fabulous and much needed family holiday – we even managed to raise £100 over there with lovely people wanting to help and buying wristbands!!

But all too soon – it was over and we landed back home, back to reality!



The girls went back to school and we just about managed a whole week before Amelie’s catheter blocked!! We let the team know in Manchester and waited for an appointment. The next day she had an appointment at Audiology for a repeat hearing test as her right ear was not performing too well but she struggles to wear her hearing aid comfortably! Typically, we got there and they couldn’t do it as her ears were full of wax!! They sent us on our way with a promise of an appointment to bring her back to try some suction to clear them – we are STILL waiting!!

The following week, Amelie came home from school a couple of days – very tired and feeling under the weather, a lot of back pain and headaches. Manchester got in touch and we agreed to take her in to change her blocked catheter on Friday 18th Sept.

Amelie usually has a general anesthetic to change her catheter but we agreed to try her with gas and air this time – so much quicker and meant we could go home straight after. She did incredibly well and the consultant manage to change her catheter, her jejunostomy AND gastrostomy button!! There were a lot of tears but she did it and after a big cuddle and some calpol, we made our way home!

Last week Amelie wasn’t “herself” at all and came home a couple of times – complaining of bad back pain, headaches and looked generally unwell. Her jej site was a bit “gunky” so I took a swab on Wednesday – the ward let us know on Saturday that she had an infection and the doctor asked to see her. We came home several hours later with some antibiotics to treat an infection in her jej site, her catheter site and a urine infection!!! A Hat trick – three infections – no wonder she wasn’t feeling well, poor thing. She is so determined though and managed to carry on in between resting at home!!

This week we see the Spinal surgeons – we will mention all the back pain she has been having and after that we will be preparing ourselves for her big bladder operation next month – dreading that one!!

Will keep you posted! Sorry it has taken so long to finish this – there just aren’t enough hours in the day!!

Thank you for checking in! x