Freddie’s Journey

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Freddie had a lovely day today celebrating his cousin, George, turning three. He loved the fresh air. Happy birthday Geo...
14/06/2026

Freddie had a lovely day today celebrating his cousin, George, turning three. He loved the fresh air. Happy birthday George. And a big thank you to Auntie Maddie. Every year she makes sure that Fred has a party bag that he can enjoy. It’s something that that so many overlook but it means so much! X###

So we tried some new this evening. Before giving Freddie his bedtime meds, we let Lizzie climb into bed with him to give...
10/06/2026

So we tried some new this evening. Before giving Freddie his bedtime meds, we let Lizzie climb into bed with him to give him some cuddles. At first, he looked confused but then he started giving her the biggest smiles. It was a lovely moment for both of them! ❤️

So I’ve spent my morning putting out fires for this little dude! Chasing prescriptions from the hospital that I ordered ...
09/06/2026

So I’ve spent my morning putting out fires for this little dude! Chasing prescriptions from the hospital that I ordered ten days ago, before he runs out. Getting his ears looked at by the GP, as he’d had some spots of blood….just to name a couple of dramas. lol! 😂 Very stressy morning…but this little dude isn’t phased at all! He’s a happy little dude today!!!

Enjoying the multi sensory room at Rainbows!! 🌈
24/05/2026

Enjoying the multi sensory room at Rainbows!! 🌈

So Freddie made it out of hospital on Sunday and yesterday we came to Rainbows for some respite. So far we’re having a g...
23/05/2026

So Freddie made it out of hospital on Sunday and yesterday we came to Rainbows for some respite. So far we’re having a great time. Swimming, massages, Lizzie & I have enjoyed a sleepover in the parent flats, Evie’s enjoyed learning to climb and descend the stairs in soft play, & she’s been mesmerised by teletubbies on the big screen in multi sensory. Fred’s looking so much better now!!

Little update on my boy…he’s on the ward and things are improving. In the early hours of yesterday, we were called down ...
15/05/2026

Little update on my boy…he’s on the ward and things are improving. In the early hours of yesterday, we were called down to him as his stomach had swollen up massively and he was non responsive. He was monitored so we knew he had enough oxygen and his heart rate was ok, but he just wasn’t waking up.

Now the swelling has come down and he’s looking better. The doctors said it’s very rare but occasionally when you get an infection it can cause swelling. So it’s the very beginnings of a chest infection that caused it, so that’s being treated now as well.

Thank you for all the birthday wishes I received yesterday. Although it wasn’t what we wanted, I was still spoilt with flowers, chocolates and, thanks to Andrew & his dad, I now have a nice chunk of spending money to go shopping with. (That was a massive treat as I never get to spend anything on me, so once Fred’s home, I’ll enjoy a little shopping trip.) I also take comfort in the fact that this wasn’t, by far, my worst birthday. To put into context, three years ago on my birthday, I was in hospital myself suffering a miscarriage while Freddie was upstairs on the ward desperately poorly himself.

So although we’re here again, we’re feeling positive, & optimistic that this won’t be a long visit. 🤞🏻🤞🏻🤞🏻

Thank you for all the birthday wishes so far via text, FB or Insta. They’ve all been read and appreciated. Apologies if ...
14/05/2026

Thank you for all the birthday wishes so far via text, FB or Insta. They’ve all been read and appreciated. Apologies if I’m not quick to respond today. I got woken at 5:30am this morning by this little troublemaker having a medical emergency and needing a 999 call. Updates will follow when we know what’s happened. They’re in the process of investigating on A&E. He is now improved though and fully awake and charming everyone on A&E with those huge smiles.

Birthday celebrations will follow when my boy is home again. lol! 😂

This popped up on my TikTok, and I felt I had to share. I think it was written aimed at SEND parents but it’s spot on fo...
11/05/2026

This popped up on my TikTok, and I felt I had to share. I think it was written aimed at SEND parents but it’s spot on for medical parents too. Worth a read if you’re a parent carer. ###

Oh my days!!! This is a side of medical parenting that people don’t see. Nutricia supply Freddies milk. His milk is his ...
06/05/2026

Oh my days!!! This is a side of medical parenting that people don’t see. Nutricia supply Freddies milk. His milk is his only form of sustanance. He has a strict diet plan with set calories and fluid intake. His milk is not something that we can ration or just do without. Without his milk, he starves….its as simple as that. Every month I request how many bottles are needed. Nutricia then request a prescription from the GP and deliver it out. Most months it runs smoothly. Until this month. Friday a delivery was expected and nothing arrived. Thankfully I always keep a buffer just in case, plus the hospital were able to give us a handful of bottles so we had a weeks grace. Since Friday, I’ve been calling and chasing every day to get this milk delivered. Today, I have spent all morning on the phone back and forth between the GP and Nutricia trying to fix someone else’s screw up. Every time I spoke with Nutricia I got a different person and a different story. I did what I was supposed to do, but someone else in the chain has screwed up. It wasn’t something I could just leave because Fred would have suffered as a result. About an hour ago, I was at my wits end & called the dietitian asking them to try and fix the issue. I’ve finally just had a call to say that they’ll cut Nutricia out and just get our local pharmacy to issue the milk. The only downside is that we’ll need to collect it ourselves, but at this point, I couldn’t give a monkeys. I just need my boy fed! It’s no wonder I’m on meds for anxiety when I’m dealing with s**t like this!!! Thankfully we had care for Freddie today, so I was able to sit on the phone for hours. Had I have been caring for Freddie too, the stress levels would have been so much worse!

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Derby
DE22 3

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