Goldie's Voice

Goldie's Voice Follow your heart. Listen to the omens. Believe. What will be, will be. Always. Love wins in the end.
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Day 38 (Stay 2):Getting close to discharge. A few more sessions sitting upright, in her wheelchair and hoisting. Two per...
19/06/2026

Day 38 (Stay 2):

Getting close to discharge. A few more sessions sitting upright, in her wheelchair and hoisting. Two person requirement to hoist to keep her leg and hip safe. Positioning, manoeuvring. Not just in hospital, home too. Will need to rearrange furniture and rooms.
Was good to be out of the ward briefly again. Golds got to watch me eat lunch in the cafe and I got to sit and think about how people probably wonder why the little girl doesn’t have any food ordered for her (always a worry of her dads - another joy of tube fed, nothing oral).
A nice bed bath afterward to refresh. I’m still spinning at how straight and tall she is after spinal surgery 🥰



Day 37 (Stay 2): Hoisted out of bed again to spend time upright and sitting. Needing to increase this as a requirement t...
18/06/2026

Day 37 (Stay 2):

Hoisted out of bed again to spend time upright and sitting. Needing to increase this as a requirement to get home.
A visit to the library was enjoyed. A book with insight to a soldiers experience during war and a helpful, life saving messenger dog ‘Nipper.’

Last night purchased a beanie to support the and brain cancer in honour of losing her Poppy in March this year.
Today, after the library, I took Goldie to IGA for her to purchase some ‘lucky dip’ inflatable’s.
What an outing hey : )
Anyway, a day closer to home 🙏🏻



🫂

17/06/2026

Day 36 (Stay 2) - Part 2

Nuclear Medicine Bone scan results are in (different to osteoporosis).
We have blood flow to the femoral neck 🎉
If the we (did not) have, Goldie would have been wheelchair bound, no weight bare at all for at least 12 months.
Having the better result, blood flow, we can now reassess in 6-8 weeks. No weight bare in the mean time but what a huge relief!
So….. surgery and 8 days straight in a bed, punishing, receiving this news means what?
Sitting up Golds. Let’s get to work 🎉



Day 36 (Stay 2):Bone mineral density scan results are in.Osteoporosis is a condition where bones lose density and mass, ...
17/06/2026

Day 36 (Stay 2):

Bone mineral density scan results are in.

Osteoporosis is a condition where bones lose density and mass, compromising their internal structure and making them highly fragile. As bone strength declines, the risk of debilitating fractures—even from minor bumps or falls—increases significantly.

Low bone density is often referred to as the "silent disease" because it progresses without pain or symptoms until a bone breaks.

The Low Bone Density SpectrumBone density is measured using a Dual-Energy X-ray Absorptiometry (DEXA or DXA) scan, which compares your bone mineral density to a healthy young adult reference (yielding a T-score):

Normal: T-score of -1.0 or higher.Osteopenia: T-score between -1.0 and -2.5. This indicates lower-than-average bone density, which can progress to osteoporosis if left unmanaged.Osteoporosis: T-score of -2.5 or lower.

Goldie has scored -5.4 based on her age, height and weight.
Treatment is available which is fantastic news and it has a high success rate.



15/06/2026

Day 35 (Stay 2):

Woken up with her infectious smile back! So welcomed and lovely to see (sorry it’s early roommate).

Nuclear Medicine bone scan scheduled for this morning to see if blood is getting to the femoral head 🤞🏼 🙏🏻



Day 34 (Stay 2):Bone density scan done. No official score/number given yet. (Doesn’t make a difference to me).Check out ...
15/06/2026

Day 34 (Stay 2):

Bone density scan done. No official score/number given yet. (Doesn’t make a difference to me).

Check out the hardware on Goldie’s spine and leg! Robotic.

Years ago during a hospital stay, Goldie’s skin was sensitive to brown tape and today, discovered she is also to bandages.

We hope your day was better than ours!



Day 33 (Stay 2):Daddy slept overnight. Not much happens over the weekend. Waiting.No further news yet.
15/06/2026

Day 33 (Stay 2):

Daddy slept overnight. Not much happens over the weekend. Waiting.

No further news yet.



Day 32 (Stay 2):Slept most of the night (startled each time the neighbouring 18 month old with a broken femur cried, whi...
13/06/2026

Day 32 (Stay 2):

Slept most of the night (startled each time the neighbouring 18 month old with a broken femur cried, which was ALOT, but, she resettled). His mum was apologetic and I was, “nooo… don’t be silly, we aren’t in a hotel, sick kids, it’s ok.”

Asleep almost all day too. Had a smile this morning at Peppa Pig playing on a tablet but super brief.

I’d like to share a thought. It makes my heart happy in this distressing time.
When I let it sink deeper, everything is ok, life is the way it is supposed to be right now.

What am I talking about?

Three incredible, older brothers.
Their resilience, empathy, understanding, compassion and love: everything the world needs right now.
Pure heart.

Facts:
Elliott was the first, before anyone to phone, “is Goldie out of surgery, how is she?”
Oliver, FaceTime from over seas, odd hours, from London, “how’s Goldie?”
Tobias, “how’s Goldie, when will she be home?”

We are ok. Boys under 21 looking out for their sis and expressing their concerns, and hearts. We are winning.

The higher source 🙏🏻

Note: The only photo taken today, is of Goldie and yes, Elliott is her bestie. He is grand with her 💓



Day 31 (Stay 2):No quality night sleep due to severe apnoea and alarm going off constantly. Literally.Unsettled all day....
12/06/2026

Day 31 (Stay 2):

No quality night sleep due to severe apnoea and alarm going off constantly. Literally.

Unsettled all day. Mild temp this morning but went back down. Ceased Fentanyl. Still nurofen 3 times daily, oxy as needed and panadol if required.

Not sure if it’s 3 full days and night in bed, pain, or the realisation of what’s happening but no smile. Not even the big blue eyes talking with me the way they usually do. Looks flat, defeated, sad.

Tuesday a bone mineral density scan which I can already guarantee ‘low’ as a symptom of Rett Syndrome is osteoporosis- ‘weak, brittle bones, prone to fracture easily.’

After this, another bone scan to see if blood goes to the femoral head (the ball of your hip joint).

When blood supply to the femoral head (the "ball" of your hip joint) is disrupted, it starves the bone tissue of vital oxygen and nutrients.

If left untreated, this lack of blood flow leads to a predictable, often debilitating cascade of events:

Bone Cell Death: The bone tissue (osteocytes) begins to die, weakening the structural integrity of the femoral head.

Joint Collapse: Over months to years, the dead bone cannot support the weight of the body. It begins to flatten or collapse, causing the smooth, rounded ball to lose its shape.

Severe Osteoarthritis: As the femoral head deforms, it grinds against the cartilage in the hip socket, resulting in rapid and disabling arthritis.

Changed rooms again. Twin this time. A very miserable 18 month old with snapped femur.
Golds has an air bed now which hopefully brings more comfort.



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