A plea for help

Early on I was reluctant and ashamed to ask for help. But my hand was forced. I had amazing help from my family and best friend in the early days when Violet would scream for 12hrs a day and I physically couldn't care for Henry too. As our journey has progressed I have accepted and … Continue reading A plea for help

Surgery

I can’t stop staring at Violets beautiful unblemished skin and feeling physically sick that she will be gaining scars next week. A long incision scar and the GTube insertion site too. The decision to start tube feeding was brutally hard for us in January. But we have always known it’s the right decision, it still … Continue reading Surgery

Splashy

We absolutely love our splashy bath seat from Firefly by Leckey ❤️We use it everyday for bathing but in the summer it really comes into its own. We have fun with paddling pools, sandpits, the beach, ball pits, sprinklers and just chilling like a princess in the shade 💁🏼‍♀️It has been a life changer for … Continue reading Splashy

Bed Dread

We've had a large amount of specialist equipment come into our lives. From bath seats, a specialist trike, a seating system, gait trainer, standing frame, buggy, GoTo seat, Scooot etc. All of these things I have embraced with open arms, I have only ever seen them as much needed aides. My husband and family have … Continue reading Bed Dread