This Try-somy Girl

This Try-somy girl tries damn hard. Slowly she has regained strength, little by little over the last year. She's back doing her crunches, and back on her tummy. 

She used to be able to "penguin scoot" across the floor, but we're not expecting that to happen again. We're just happy she's improved and in her awareness as well.

Double Whammy

June was supposed to be the school holidays. It was no holiday for us.

We spent the last 3 weeks of June with Vera in hospital. She has a viral infection - RSV. Thankfully, it turned out to be not as serious as the one last year. 

Then, before she could be discharged, D got sick. After 7 straight days of high fever, we brought him to the hospital. It turned out to be Mycoplasma Pneumonia. 

From doing our 'hospital rounds' at one hospital, to 'hospital rounds' at another. In total, Vera was sick for 5 weeks and Daen for 2 weeks. 

The after math: Ian and I are burned out. (Both of us once drove away from our intended destination, our minds were not on the road.)

I cannot stay overnight at the hospital - I can't think straight and work with the doctors in the day. 

I do the day shifts, and our helper and Ian do the nights. 

Ian did all the nights with D, saved for the last one (me). It is no joke trying to sleep in a room full of infants crying through the night. 

No wonder patients and caregivers are grumpy! Lack of sleep is a killer. 

For the first time, we did a double discharge - on consecutive days. 

We're all back home now. 

Pray no more hospital stays for 2017. 

Gaining Strength

Vera is improving, slowly but surely. Mummy bought a bench, so we can sit with and support her while she practises her sitting. 

Sorry for the lack of posts - was dealing with a 3 month long on off illness, settling into a new job, and had to manage a change of caregiver for Vera.

Things have started to settle down. We are hopeful that the second half of the year will be more peaceful.

Thanks for the support, our dear readers!

The High Cost of Special Needs Equipment Our Kids Need

As a special needs parent, one major bugbear we have is the cost of special needs equipment. They are extremely expensive.

Why? 

Answer: They are made in the US. And in the US, special needs equipment are covered by government insurance. So no direct out of pocket from consumers, hence no direct incentive for manufacturers to lower their cost. 

And our kids need them. Bath chairs, remote control chairs to give a sense of independence and freedom, gait trainers to teach children to walk, and of course pushable wheelchairs. 

Bath chair for safe bathing

Remote control wheelchair

Gait Trainers that help kids learn to walk

The good folks at Paediatric Seating Solutions Sam and Jimmy (above) help kids find suitable equipment.

For many special needs parents like myself, these are the "luxury goods" we own, in place of luxury bags or shoes.

Here are Vera's necessary items - more expensive than any piece of furniture in our home. 

Rifton Activity Chair approx $5000

Rifton Feeding cum Activity Chair that allows tilting forward and backward with side supports for her Scoliosis and for easy moving around the house. Without this chair she would basically lie in bed the whole day or on the floor.

Zippie TS Wheelchair

Zippie TS Wheelchair for going out to school 5 days a week. Also allows tilting and with support for Scoliosis. High enough so we don't have to bend so low (backache) to lift Vera out. This was a gift from Make-A-Wish which we really appreciated.

Vera Can Go Places Now

Make-A-Wish threw a balloon-filled Wish Party for Vera and our friends and family.

On 7 January this year, Vera got a new wheelchair from Make-A-Wish.

They grant the wishes of children who are chronically sick.

Each child can have one wish granted. Since Vera cannot tell us what she wishes for, we as her parents get to decide for her.

It was a simple decision.

As an immobile child, the only way Vera can see the world is for someone to push her around or sit in a vehicle.

Vera had outgrown the stroller she had been using since she was 3 years old. She was way overdue for a new one. But because of her Scoliosis - her spine is an S-curve, she needed a wheelchair that could provide customised support so her Scoliosis would not worsen. With such a wheelchair, she could sit for hours in school well-supported.

On the day of the reveal, wish granters surprised us with a chair decked up in a rainbow of colours.

The theme: nursery rhymes "The Wheels On the Bus", "Baa Baa Black Sheep" "Humpty Dumpty". Humpty's expression sums it up "Why are you sleeping at your own party Vera???"

Her day-night reversal meant that she wasn't awake throughout the party.

It was a shame. There were fun and games, a cake, and pretty decor. The last time we had something like this for Vera was at her 5th birthday.

It was great to have our family and friends with us at the party to share the joyful moment. The last we had gathered was under sombre circumstances at the hospital last April.

Thank you Sam, Jimmy from Paediatric Seating Solutions and Auntie L for the hard work behind the scenes getting the wheelchair fitted just right for her. Thank you Make-A-Wish for the gift. Vera can go places now.

TODAY: Caring for a special child

Wrote an article that appeared in TODAY, today. Sharing the journey we've been on with Vera.