Homecare Visit by NUH Paediatric Homecare Team

 

Vera's medical homecare team travels practically across the island to visit her. They take her blood to test her CO2 buildup, check her oxygen levels, listen to her lungs, give her vaccine jabs and refer us to any specialists. Having the same one doctor follow her case through the years has given us a sense of reassurance. Whenever Vera is hospitalised, we know that Dr T is always in the background, monitoring her care with a long understanding of her baseline and recovery patterns while the onsite team works. Hospital anxiety is greatly reduced. We are very lucky to have a child with complex care needs in Singapore. Where not only is medical care of high standards, it's easily accessible (in the US you can travel a day to the hospital), and subsidized substantially by the government. Since day one, our experience with our chosen hospital has been one of compassion, hope and excellence in care for both patient and caregivers. It's a partnership and we are truly thankful for.

To The Hospital

 In 2024, Vera fell sick twice, about 3 months apart. She spent almost 2 months in hospital in total, and 2 months recovering at home. We'd only gotten her fully recovered in November 2024.

It's March 2025 - just 3 months later - and we're headed to hospital again. This time, no one around her is sick. However, we noticed that she'd have fits of coughing when moved around after feeds. Once was transferring from wheelchair to car before and after a routine check up. It caused non-stop coughing and secretions in the car. Another time was feeding and then moving her around in the wheelchair at an event, going over several humps. 

Hopefully, with the PH impedance test results we can have more clarity on how bad her reflux is and prevent future rounds of aspiration pneumonia. 

We are thankful for this machine from the homecare team at NUH that is portable, so we can support Vera with the biPAP on the way to the hospital. 

CNY 2025

 How the years have flown by. Vera is now a young lady and Daen is now a young man. (And we are approaching our senior years.)

Mall Shop

 This was on a good day in a mall shop that had the words on the mirror "you're doing amazing sweetie". I hope we can resolve her aspiration issues and have her home soon. 

Vera Turns 17

We celebrated Vera's 17 birthday in matching tees. It was the same day as the Carry Hope 2025 event we'd just attended, where the Love Is Not Rare music video was aired to the crowd.

I got a little emotional while singing to the video. It was nice that Abe, who was with us during the making of the video back in 2018, is here next to Vera. 

 

Bye Auntie L

 We got to hear that Auntie L is retiring. Auntie L has been seeing Vera since she was a baby. From putting her in her first seating in a My First Years feeding chair all the way to this Zippie, which she customised to support Vera's worsening scoliosis. 

Auntie L came to adjust Vera's wheelchair for the last time today. We are very blessed by the years of her expertise that have benefitted Vera. You will be missed.