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Standing Trials

Updated: Jul 27, 2023

On the precipice of new forms of physical therapy, we had to evaluate Olivia's physicality, pain tolerance, symptom management, and ambulatory skills with her physicians today.

Our goal is to get Olivia to stand.

The benefits of standing are numerous (bone density, gastrointestinal health, muscle flexibility, vestibular maturity, sensory input, etc).

The truth is: we don't know if she's able.

Olivia's feet are contorted from Dystonia and her inability to bear weight.

She will need prosthetic and manual assistance to get her feet into a neutral position.

This will take months, if at all possible, and she isn't a candidate for surgery because her diagnosis is degenerate (whatever we do, will be undone).

There are so many costs for us to weigh, not just monetary ones.

Keith and I make decisions on behalf of our daughter, who cannot speak for herself and has the inability to verbalize when something is uncomfortable, or painful.

We move forward with Olivia's quality of life at the forefront.

This is a heart-wrenching way to parent, so Keith and I adjust our humanity accordingly, and cling to one another.

Olivia in early intervention therapies, April 24, 2019.

Olivia loves to play run with dad.

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May God give you AND Olivia's medical team wisdom, as you navigate these waters. May He also give you strength and yet be your rock, when you are weak.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble of heart; and you will find rest. For my yoke is easy, and my burden is light.” Matthew 11:28-30

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Shalamar Iris
Shalamar Iris
13 abr 2021
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Thank you for your prayer, Julie.

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