Freddie’s Journey

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Today is Polymicrogyria Awareness Day! Otherwise known as PMG. The description of Freddie’s condition given to us by his...
09/09/2026

Today is Polymicrogyria Awareness Day! Otherwise known as PMG. The description of Freddie’s condition given to us by his neurologist is that his brain didn’t open out properly in the womb, so connections are being made that shouldn’t, and some connections are just non-existent. PMG is surprisingly common but often goes undiagnosed. It can only be picked up by MRI. Freddie is quite a severe case, but on milder cases can present as Autism, ADHD, or dyslexia. Unless you’ve had a reason for an MRI, you can go your whole life undiagnosed. The more severe cases also mirror cerebral palsy, so it’s not unheard of for PMG to be misdiagnosed as CP. often doctors don’t even know of the condition. I’ve lost count of the number of times doctors have given me a blank look and said they’d have to read up on the condition.

Anyway, I’ve done my bit now for spreading awareness! Every day is a school day! Lol! 😂

Must be September again! Thankfully this is a flying visit…rushed in by ambulance late last night…being discharged this ...
08/09/2026

Must be September again! Thankfully this is a flying visit…rushed in by ambulance late last night…being discharged this evening. We caught it early, thank god!

What a weekend we’ve had….oh my days! So on Friday evening it became clear that Freddie was suffering with a cold. A col...
01/09/2026

What a weekend we’ve had….oh my days! So on Friday evening it became clear that Freddie was suffering with a cold. A cold isn’t just a cold with Fred. It starts a battle to stop it becoming a chest infection. The doctors have given us loads of tools to try and keep him home from hospital, including sos antibiotics, extra strong nebulisers, I’ve been trained in chest physio to keep everything moving etc etc. So all weekend we’ve been on high alert, working bloody hard to keep him home. This morning is the first time I’ve felt confident enough to say that I think we’ve managed it. He seems to be over the worst now, thankfully.

However Sunday, while we were in the midst of Freddie management, Lizzie had an accident and we had to rushed her to A&E. Honestly, these kids are gonna kill me one day. 😂😂😂 She was on her scooter going to her friends house. She went flying over the top of the scooter and skidded along a concrete pavement. She called us to come and get her, and she was a mess, bless her. Abrasions all down one side of her body including her face. Her pinky finger looked wrong, so we took her up to A&E to get her an x-ray. Thankfully, it wasn’t broken, but her hand was cleaned and dressed as she had a nasty cut. We were lucky as well that A&E wasn’t busy. We were in and out pretty quick. Never known it so quiet. Lol! Lizzie is okay though, just embarrassed (which is why I’m not sharing photos of her face). I think she’s more annoyed that her left hand got injured, so there’s no avoiding school work next week. 😂😂😂

I don’t know what it is about bank holidays but my kids seem to love playing up on a bank holiday weekend. 😂😂😂

When your two year old sister has decided you need toys! 😂😂😂
26/08/2026

When your two year old sister has decided you need toys! 😂😂😂

Happy 7th Birthday to my incredible little boy!!! I can’t put into words how proud I am of this little warrior, and how ...
16/08/2026

Happy 7th Birthday to my incredible little boy!!! I can’t put into words how proud I am of this little warrior, and how unbelievably blessed I feel to have got to this birthday with him. We never thought we’d get him to two, let alone seven!!!! Now look at him…stronger than ever…my own, home grown, superhero! Keep proving those doctors wrong and keep smiling my wonderful boy! We love you so very much Batman! The sky’s the limit my little man! ✊🏻✊🏻

All ready for my birthday boy tomorrow!!! Freddie doesn’t cope well with birthdays like most children. He gets massively...
15/08/2026

All ready for my birthday boy tomorrow!!! Freddie doesn’t cope well with birthdays like most children. He gets massively overwhelmed & stressed by it all. So this year we’ve gone for a slightly different approach. Instead of loads of gifts that he can’t play with, stresses him out, and his sisters will probably claim eventually, we’ve decided to limit his gifts and take him out for the day instead. So tomorrow, we’re off to the space centre. We were torn between animals (Bluebells farm), the space centre and a train ride (Ecclesbourne Valley Railway). All three things, Fred would love. However the space centre has proper changing facilities for him so that swung it. So here’s hoping my special boy has the best day tomorrow!!!

Freddie’s not impressed by his sisters plan to do some painting….😂😂😂😂
10/08/2026

Freddie’s not impressed by his sisters plan to do some painting….😂😂😂😂

Freddie went out for a walk today with his carers. He loved seeing the horses and enjoying the roundabout.
05/08/2026

Freddie went out for a walk today with his carers. He loved seeing the horses and enjoying the roundabout.

We requested Fred’s standing frame to be brought home for the summer, so today he had a little playtime while standing u...
01/08/2026

We requested Fred’s standing frame to be brought home for the summer, so today he had a little playtime while standing up. He even helped Lizzie and I to bake a cake. 🎂 He’s a very tall boy now!! lol! 😂

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