Brody's Journey

20/02/2025

Hi everyone,

It's been a minute since there was any activity on Brody's Journey and I wanted to give an update as to why and what's been happening.

Back at the beginning of December, both Myles and me had what was diagnosed as a chest infection. We both started antibiotics and I just prayed Brody could avoid it. He didn't. On the 14th December, we took him to the Great North Children's Hospital in Newcastle as that's where he receives his specialist care and where his respiratory consultant was luckily on call. Brody was diagnosed with Influenza A and at around 7pm he closed his eyes and didn't open them again for around 36 hours. He was on 7L+ of high flow oxygen.

On Monday, as he began to come round, he started having seizures and he clustered for 30 minutes, which meant rescue meds were administered. The meds knocked him out again but they stopped the seizures. Tuesday morning, despite being on high levels of high flow oxygen, he continued to desaturate and his consultant made the decision to involve the intensive care team. Brody had an xray which showed his left lung had partially collapsed and he was requiring a jaw thrust to keep his airway uncompromised. He was being physically supported by 2 nurses and had maxed out the amount of wall oxygen he could have. In the 3 or 4 minutes between making the decision to move him to PICU, and the Dr retrieving what she needed to transport him, Brody stopped breathing. I had to pull the emergency lever and what felt like every Dr and nurse in the building descended on our room, to help our boy. He was bagged and rushed round to intensive care.

Thankfully with the help of a bipap mask, he pulled round and following 36 hours in PICU and another week on the ward, we were discharged on Christmas Eve💜

The 2nd January Brodes was under the weather again and so we took him back to GNCH to be on the safe side. He was readmitted for a further 11 days with a double bacterial chest infection. He thankfully managed on wall oxygen, through a nasal cannula or small mask, and was his happy, chatty self for the vast majority of our stay.

He was discharged with prophylactic antibiotics that he takes once a day to try and keep any bugs away (although their effectiveness is questionable has he's had a further chest infection since then and has had more antibiotics!) Brody now also utilises home oxygen and is on it overnight to help him (and us!) sleep peacefully and safely.

He couldn't return to school initially as they needed oxygen and a updated risk assessment in place for him, but he's been back three weeks now and has settled in like he's never been away. He even received a certificate for his enthusiasm. Brody's school are absolutely amazing and I hand him over without a shadow of a doubt, that he's being loved and cared for and having the time of his life.

It's been a hell of a few weeks for us and for our families. We nearly lost our boy in December and since then we've focused on keeping him safe and making Myles feel as loved and secure as possible. Life finally seems to be settling down into our new normal and although we don't know what's round the corner, we are making the most of every second we have together with our boys💜

30/11/2024

30/11/2024

🎄 TOMORROW is our annual Hatfield Christmas Fair! 🎅

Come down and join us and help support lots of small businesses and Brody's Journey ❤️

🌟Victoria Hall, Hatfield DN76RY
🌟 10am -3pm
🌟 Car Park at Rear
🌟 Sunday 1st December

26/11/2024

My Auntie Jess is selling these at Hatfield Christmas Fair this Sunday. They're being handmade by very special friends of hers and 20% of all profits are going towards my fundraising journey💜

06/10/2024

Today is World Cerebral Palsy Day💚

Brody has spastic dystonic cerebral palsy which affects all 4 of his limbs. He can't hold his head up independently and although with support, he can manage for around 5 or 6 seconds, his head will flop backwards, or his chin will drop to his chest. Both of these positions risk a compromised airway and so Brody requires 24/7 positional support.

Although Brody can move his arms and legs, he does so with no real intent. He tends to kick his legs when he is excited- we call these his happy legs💚 but he can't crawl or walk. He can't weight bear on his legs, and can't grasp things with his hands. They are in an almost permanent fist, although he does enjoy having his fingers straightened and stretched and his palm stroked💚

As a direct result of his immobility and lack of independent movement, and so another symptoms of his Cerebral Palsy, Brody requires hip surgery in the very near future- we are waiting for a date from the RVI. His left hip is over 35% out of socket (this percentage is from a June xray so it will be worse than this now.) When babies are born, their ball and socket joints in their hips are very shallow. As the baby learns to move and to walk, their movement, combined with their weight, naturally deepens the socket. As Brody doesn't move this way, his socket is as shallow as a newborn baby's would be, thus the migration of his legs out of his hip joint. The surgeon will insert a screw into each of Brody's hips to hold them in place, and he will also have a soft tissue release in his groin to reduce how tight his muscles are. This surgery will need to be repeated every 12-24 months, and bigger screws used, until Brody has stopped growing. Another of the symptoms of his Cerebral Palsy is dystonia, meaning extreme high muscle tone, and this will pull on the screws, meaning a soft tissue release is necessary.

While the surgery itself is hard enough, our boy doesn't react well to general anaesthetic and so time in intensive care is guaranteed. He has a brilliant respiratory team at the RVI who will be on hand as soon as the surgery is done, but the fear he will struggle to breathe on his own afterwards is a real one for us. Brody has something called bulbar dysfunction- another symptom of Cerebral Palsy- which essentially means everything at the top of his airway is floppy. The bigger he gets, the bigger the floppy parts of his airway become. At some point in the not so distant future, we have been told be will require permanent oxygen.

Cerebral Palsy isn't always *just* a diagnosis that affects a person's movements. It's a sliding scale of a diagnosis and for our boy, it comes with a lot of added symptoms and side effects.

I share life with Brody, and some of the ins and outs of his diagnosis because I want to raise awareness and educate anybody who wants to learn. In this day and age, everybody shares their lives on social media, so I do too. Except my aim is to raise awareness for Brody, and for Myles, so he can grow up surrounded by people who know, love and accept his brother💚

15/09/2024

Our wonderful friend Fliss at Woofs and Dreams organised a dog show where all funds raised went to our boy's fund and managed to raise a huge £1000!! We are absolutely blown away.

I can't even begin to explain how grateful we are to every single person who sponsored, entered their dogs, donated raffle prizes, bought tickets etc. And to Fliss for being an absolute legend and to Brody's Auntie and Uncle for all their help in organising. As parents, you never in your wildest dreams imagine yourselves in the situation we are in. We alone can't give our boy everything he will need to live safely and comfortably. Thanks to all your amazing donations, we are one step closer to giving Brody the future he deserves💜

08/09/2024

My amazing friend Lauren Moss ran the GNR for our boy today. Not only did she smash her time from last year, beating it by 5 minutes, but she's managed to raise more than double her fundraising target💜 We are so so lucky our boy is as loved as he is💜

08/09/2024

Waiting to cheer for Lauren Moss 💜

*I posted this about 1 o clock- she's well finished now!

06/09/2024

Woofs and Dreams are having a fun dog show where all funds raised will go to our Brody's Journey💜 if you're South Yorkshire based (or not!) and fancy entering your pooch into one of the classes, please go along! Sunday 15th September, Sykehouse Village Hall, 11am💜

12/08/2024

Our wonderful, amazing family friends have decided to do a 60 mile bike ride, from Glasgow to Edinburgh, in honour of our boy💜

Please please dig deep to sponsor them and their amazing fundraising efforts for Brody💜

Steve Montgomery

Help Steven Montgomery raise money to support Just4Children

31/07/2024

We have reached the £10k mark on Brody's fundraising page! To say we are blown away is an understatement💜 Thank you all who have donated and to those who have fundraised- to Dale Rhiannon and Regan for raising just under £600 with their pier to pier walk, and to my cousin Chris and friend Lauren (who is still training while on a cruise!) for doing the upcoming Great North Run to raise funds for our boy💜 We are so eternally grateful 💜

Brody's Daddy has a big challenge coming up too- more details will be shared this weekend, but it's his biggest physical challenge yet!

05/07/2024

After a really busy week, a pj day was in order💙 and Brody isn't mad about it!