On the mend

Good morning everyone Alfie is most definitely on the mend! He’s excited to finally see his brother and family for the first time in a week. 

At some point today Alfie will be taken off his fluids and epidural.. It will then take up to 12 hours before he starts to get that feeling back in his lower body.  

He can’t wait to be able to feel his new legs! 

Later on he will be moved wards and he’ll be positioned slightly up right for the duration of the weekend. 

I’m very proud of him. He’s been so brave and a pleasure to look after said the ladies on this ward.

Alfie has managed to finally eat something at lunch time

Alfie has managed to finally eat something at lunch time and keep it down. His favourite jacket potato with cheese and a choc milkshake. 
The doctors have been round, they are going to take bloods and hope to start taking him off some of the machines tomorrow if he continues to make progress. 
We might start to see that smile creeping back soon ☺️

At present he’s enjoying reading one of his good luck books … I think that could be a slight smile in his face I’ve managed to capture

Complaining of pain regularly

Little Update …. 👣Alfie isn’t getting much sleep at present as they are keeping a closer eye on him with his obs due to still vomiting and not passing any urine. 
They have put his fluids up further to see if this will make a difference if not they will be taking bloods at some point and checking his kidneys. 

He is complaining of pain regularly so this will be dealt with although he’s already on quite a lot of different pain relief. 

He is absolutely worn out but mam has managed to get a couple of words from him tonight.

I think he just likes to keep us all on our feet but we have no doubt he will bounce back and show us that smile again soon 💙🙏

A huge sigh of relief!! Alfie is out of theatre. 💙


A huge sigh of relief!! Alfie is out of theatre. 💙
The operation was a success. It was very straight forward, no problems and one of the easiest ones he’s done.
He is feeling very groggy and exhausted. His body is extremely weak.
Over the next few days Alfie will be bed bound as he has to lay flat.

Mam was told to immediately feel his legs and wow what a difference.

Miracles do happen 👣👣

Tears of joy

Our little Alfie is so brave although he has told his mam off already but in years to come he will understand and appreciate it 💙




Pre assessment

Alfie has been for more pre assessments today. He has spent the entire day in hospital.
It hasn’t been easy as today after some long tiring assessments mam was informed the operation wouldn’t go ahead tomorrow and next available surgery wasn’t until April 💔
Mam and Alfie were left devastated to say the least. (This isn’t anything to do with Alfie)

Mam toughed it out and wouldn’t budge. Rightly so she wanted answers face to face as this journey to get here hadn’t been easy!
Later on after a meeting, things progressed better and mam and Alfie were told the surgery is going ahead first thing tomorrow.
Mam and Alfie are very emotional and tired. They are praying tomorrow is successful.
Today is just another day that they fought and didn’t give up..
Alfie still has that smile on his face. #inspirational💪🏼

We get knocked down but we get up again 👊

  1. We will keep everyone updated as soon as we can – but tomorrow is going to be the longest day of our family’s life 🙏

2 more sleeps 👣

Isn’t modern day technology great.Alfie face timing his little brother and cousin 💙 

Another big day tomorrow for Alfie he will spend all day in hospital having more pre-assessments and meeting the Surgeon and other specialists who will be looking after him for the next month 

2 more sleeps 👣

Alfie’s assessments 

Alfie has been to one of many pre assessments today. He’s done lots of walking so they can record his legs without his foot/leg splints on so they can get a good indication of how he walks before surgery. As you can see he’s on his tip toes, knees bent and knocking both knees off one another. This is because of the spasticity and also mainly his hamstrings that are a huge problem, holding him back!  

Not only does he need SDR surgery but he needs another op called hamstring lengthening too. We’ll hopefully be closer to finding out on wed more info about the hamstring op. 

Alfie heavily relied on his muscle meds to help with Physio and getting around easier. He’s now off his muscle meds which he’s been on for around 8 years now. This means he’s in more pain, struggling to move more and having spasms…. 

He’s like my little robot, BUT once he’s had surgery they believe he won’t need to go back on his meds 🙂

3 days till the life changing operation 💙

Alfie’s little brother Alex

Alfie’s little brother Alex has had to stay behind as he has school . Sometimes we forget about the siblings that are in the background. Alex will miss his mam and brother but he knows it will be worth it when one day hopefully he can kick a ball about and do all the things his friends do with there big siblings 💙💜

#Siblings #Brave #Justasimportant

Today is the start of a new life

Today is the start of a new life. Thank you to everyone who made this possible. Love me and my little inspiration 💙👣

A week of pre-assessments before the big operation 👣