From Double-Blind to Eyes Wide Open

af deck2Almost a year and a half ago, Adriana started her Ionis clinical trial at Children’s Hospital.

Since then, she’s received injections of nusinersen, a promising new drug that could cure spinal muscular atrophy (SMA), or at least stop or delay its degenerative effects.

Actually, we’re not sure if she received the injections.

We’ll never be sure.

It was a double-blind trial where only certain individuals know if she received it.

What we do know is that we haven’t noticed any regression in Adriana’s strength since she started the trial!

Even better news came out this month!

Due to the drug’s success in clinical trials in infants, the manufacturers are moving to what we pray will be a fast FDA approval of the medication!

Here’s another thing we know

adri grad

Preschool graduation walk

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Merida’s Very Happy Halloween

The stares came.

I didn’t have to see them.

I felt them, like when you’re on a crowded bus and a fellow rider brushes against you.

The stares were slightly annoying, but unavoidable.

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Note from God: You’re exactly where you’re supposed to be!

Cousins!

Santi and Adri with their 2-week old cousin, Leonardo!

As we got more and more serious about moving to Lima, we leaned more and more on God.

We asked him to guide our decision.

We asked him for the wisdom to trust that he will always provide what we need.

Now that we’re here,  I continue to ask him for strength and the faith that we made the right decision.

We’ve had our setbacks, and we’ll have more.

But, when I see our children’s faces, I realize that, right now, this is where we’re supposed to be.

I hope the same realization comes to each of you!

[Since Adri started hippotherapy, a little less than a year ago, she’s never ridden by herself. This week, her therapist got off the horse, and for the first time, Adri rode Facunda solo!]

Finding Her Footing…on 4 Hooves!

I first heard about hippotherapy (or equine therapy) a couple of years ago from a friend of mine who uses it for her daughter.

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Adri waiting patiently for her hippotherapy session on Facunda…..with a couple of treats at the ready!

Experts use horses to incorporate a number of different therapies, like physical, occupational and speech therapies.

Hippotherapy also builds self-esteem as patients build confidence in riding and taking care of the horse.

We started looking into hippotherapy in Denver, but with our move to Lima, we never made it past the first step.

As luck would have it…

This past May, Gaby brought Adriana to Lima to stay with our family here while we got everything in order to move to Peru.

At the time, we were using physical therapy services at Arie, which I’ve mentioned in previous blogs.

facunda_adri with fernanda on Facunda

Fernanda Morey, director of ANADESI, working with Adri on Facunda (pronounced FAH-COON-DAH).

As luck would have it, Gaby’s sister Susy (Adriana’s godmother) saw a story about Fernanda Morey, a psychologist here in Lima.

Fernanda is director of the National Association of Equine Therapy and Integral Health, or Asociacion Nacional de Equinoterapia y Salud Integral (ANADESI). She founded the organization 10 years ago.

We weren’t here when Adriana first started hippotherapy, but as Fernanda describes it, Adri was like a lump of Jell-O when she first got on a horse.

She had no balance and her head would flop from one side to the other.

A 1,000-pound angel named Facunda

One of the reasons people use hippotheraphy is because a horse’s gait, or the way it walks, is similar to a human’s gait.

Facunda, the horse that’s been by Adriana’s side – or under her butt – for the past six months, has been Adriana’s legs. Facunda gives Adri the sensation of walking, and the warmth of the animal helps Adri work her muscles:

facunda_adri_laying on facunda2

Adri talks to Fernanda as she feels the warmth of Facunda. The Latin “Facunda” means “eloquent speaker” — appropriate, as Fernanda uses the horse to help patients improve their speech.

  • She works her head and neck as she fights to keep them upright on the horse.
  • She works her spine and core as she works to keep her balance.
  • She works her arms as she tries to hold the reigns or raises them to maintain balance.
  • She works her legs as she lightly “kicks” Facunda to keep her moving.

Fernanda and her daughter, who we call “La China,” ride and work with Adri.  For a couple of hours a week, they are Adriana’s teachers, protectors and motivators.

They ignore Adriana’s occasional whining and encourage her when she doesn’t want to do the work.

They know Adriana is strong, and they won’t let her quit.

Taking it a day at a time

Spinal muscular atrophy (SMA) is a cruel disease with no cure…….yet.

facunda_adri_santi_on steps

Adri and big brother, Santi, on the steps used to mount the horse.

A victim’s muscles become weak and waste away. It can become hard to breath, swallow and walk.

Adri has Type II SMA and hasn’t had breathing or swallowing issues – thank God.

Although she can’t walk yet, she’s doing very well.

She’s finding her footing!

We must continually motivate our little girl to work her muscles as often as she can and as much as she can, whether it’s at a therapy session, at the dinner table lifting a spoon or at the beach digging her feet into the sand.

Every day, we realize her strong will and potential are limitless.

She’s as strong as a 1,000-pound Facunda!

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Fernanda works with Adriana on Josephina, another therapy horse.