Welcome to Just Juniors

In September of 2008, my 7th daughter Samara was born 9 weeks early. 4 weeks later, she was diagnosed with Down Syndrome. My self-therapy in learning to fully embrace her diagnosis involved designing t-shirts that portrayed Down Syndrome in a positive light. It is from this that my business, designing disability awareness products, has grown.

Saturday, May 7, 2011

The dreaded onset of winter

Time for something more personal....

Here in Australia, the days are getting shorter, and the nights are getting colder. Admittedly, not as cold as my native New Zealand. But cold enough to put the oil column heater on!

And with the winter come the colds and flus. And hospital visits. Anyone who's child has respiratory issues will know what I mean. For us, a regular cold means predimix, oxygen, sats monitors, nasal suctions, and sometimes IV's and adrenaline. And this year's cycle has begun!

4am Thursday morning saw us at the ER with a gasping 2 year old. After a few hours on oxygen and predimix, her sats were back to normal from the mid 80's where they had been sitting, and we were sent home to get some peace (the ward - if you could call it that) at the local hospital was being renovated and was VERY noisy!) before returning in the evening. Thursday night was spent trying to sleep at the hospital, where the childrens 'ward' (and I use the term very loosely - one room with 4 beds) was taken over by elderly men when the rest of the ward had filled up! So Samara and I were sharing a bed in a tiny room with no TV, and no door barrier to keep her in! Not a pleasant experience overall!

Our local hospital is probably down there with the worst of the hospitals in Australia. In a town of 7,000 in Queensland's South West, we are miles away from anywhere, and the staff are well below par with those we dealt with when we were living in Brisbane. Rather than having her on constant sats monitoring, they just checked on her once every 2 hours. Not good enough for a child who has sleep apnea, and who I had to stay awake to nudge whenever she stopped breathing! I'll be kicking up more of a stink if she ends up back there, I can tell you!

Anyway, she came back home yesterday morning, but didn't have a good day or night. I have been up with her since 4 this morning, with her teetering between being well enough to stay home, and sick enough to be in hospital! If we had a better hospital, I probably would have taken her in, but really, at least at home we could monitor her constantly!!

Last night was her last dose of predimix, so tonight may be worse. We'll just have to wait and see.

And this is the down-side of Down Syndrome. The sickness, watching Samara literally punching herself in the head, and bang her head against the wall because she is frustrated at not being able to breathe. And then, dealing with a hospital that is not doing enough to help her.

I wouldn't change her for the world. But, oh, how I wish I could change this aspect of her extra chromosome.

What things do you find the hardest about your LO's disability? Is it the day to day care, the health struggles, dealing with the so-called professionals? I really want to learn what it is like for all special parents. It is so easy to get into our own little specialised worlds. To become experts on a particular condition. And to forget that others are struggling too. I would love to hear some of your stories. To expand my horizons, and open my mind to the lives of others, so please share in the comments, or let me know if you would like to guest blog your story.

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