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

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Preschool graduation walk

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Día de la Canción Criolla

While our friends and family in the states celebrate Halloween today, Santiago and Adriana will be celebrating Día de la Canción Criolla (Day of the Creole Song) at school.

They and their classmates are dressed in traditional clothing as they enjoy a style of music that dates back to colonial times.

Peru celebrates its traditional music and dance in restaurants and parks; on sidewalks and on the beach; in the mountains and the jungle.

Here are few pictures of the kids before they headed off to school.

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Tonight, we’ll break out the Halloween costumes!

Be safe, everyone!

The forgotten son…is doing just fine

Santi's school was teaching the importance of traffic rules. Each child brought their bike, scooter or skateboard to ride.

Santi’s school was teaching the importance of traffic rules. Each child brought their bike, scooter or skateboard to ride.

It occurred to me, looking back at previous posts, that I don’t write as often as I should about our Santiago.

We made the move to Peru primarily because of Adriana’s positive response to therapy here in Lima.

But of course, it’s a wonderful opportunity for both our kids to experience living in the country that raised their mother.

As with Adriana, Santiago loves being here.

And as is usually the case with most kids, Santi is spared from the typical parental stress points like jobs (or lack thereof) and paying bills.

Then, there are the not-so-typical stress points like moving halfway across the world to start a new life.

Both our kids have handled it very well.

Santi doesn’t need much or ask for a whole lot. Mostly, he asks for cookies, or peaches or pears from the local market down the street.

Santi on his new bunkbed

Santi on his new bunkbed

He’s constantly asking for food.

Or, he’ll ask to watch Transformers. “Just this morning, daddy, while you make my egg,” he’ll plead.

He goes to preschool next door (literally). The school’s front door is about 10 paces from our front door.

He can sleep as late as 8:00 to make it to school by 8:30 formation. Although recently, his teacher, Ms. Angela, asked that he be at school by 8:00, so the latest he can sleep now is 7:30 or so.

That will all change next year when he enters grade school. He’ll be attending Carmelitas, which is where his mom and aunts and uncles went when they were kids. As the crow flies, it’s not that far, but with Lima’s snail-like traffic, it could literally take 45 minutes if we don’t plan correctly.

It’ll be an adjustment.

Some poor kids are on buses by 6:30 to make it to school by 8:00.

As for preschool, Santi’s teacher says great things about him. He has the occasional bad day where he won’t listen or wait his turn (what kid doesn’t), but overall he’s doing well and enjoys being with his friends at school.

Santi singing along with the music teacher

Santi singing along with the music teacher

Santi’s playing soccer now. He seems to enjoy it, although he gets distracted or bored from time to time. I wish I had knowledge to pass on to him, but I’m clueless in this area. Whereas every other Peruvian kid was born with a soccer ball in his crib.

I think he’d much rather be swimming, but that will come soon with summer right around the corner.

We also have him in a theater class, which he enjoys very much.

Every once in a while, Santi will mention Colorado and our life in the states. “I miss Luna (our dog),” he’ll say, out of the blue.

“Hopefully, we can go visit soon,” is our typical response.

Then, he’ll go back to asking for a piece of ham or some cereal.

Unlike his father, Santi is not shy about striking up a conversation with just about anyone. He has friends up and down the street.

Santi singing for the grandparents

Santi singing for the grandparents

Each neighborhood has a security guard, and Santi will shout, “hola amigo!” as he rides by on his scooter.

The ice cream vendors know where we live because Santi shouts after them when they ride by on their bikes.

He’s also not shy about putting people in their place. When we ride bikes, he’s quick to tell someone she shouldn’t be walking in the bike lane.

I’m amazed at his lack of fear, sometimes.

I don’t know if I was like that when I was his age. I’ll have to ask my mom.

All I know is I hope I can be like him one day…..fearless and worry free!

 

 

 

A hope for better things

Today, Adriana’s and Santiago’s preschool celebrated Dia de los Abuelitos (Grandparents’ Day).

Each classroom put on a skit.

Screen Shot 2014-08-28 at 2.17.36 PMI know from seeing Santi’s previous performances that the skits typically involve dancing, jumping and moving around the stage.

This would be Adri’s first show.

I thought to myself, “How could she possibly fit in?”

“Are they just going to sit her in the corner to watch as her classmates perform?”

I felt the butterflies in my stomach as Adri’s class prepared to come on stage.

Her classmates took their places as Adri’s teacher, Ms. Paty, carried her in and placed her in her chair.

Not on the side of the stage….but in the center!

Part of me was so excited!

She’s in the middle of it all!

Then, my nervousness got worse.

What if she falls over?

What if another child accidentally bumps her?

And I’m embarrassed to say, I wondered what other people were thinking.

“What’s wrong with her?” they were probably saying.

Then, the performance started………..and every fear, ever worry, disappeared.

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Adri moved her arms and shoulders to the music, moved her legs, sang and recited her poem, right along with her classmates.

She smiled…..and then she saw Gaby in the front row, crying.

“Why are you crying? Adri asked.

For a few minutes, Adri was a performer.

Not a child with SMA, but a performer.

A normal three-year-old child, excited about being part of the show.

Part of her group.

Yes, she had to do things a little differently than the others, but she belonged.

She belonged!

It was her first performance. The first of many.

Some — like this one — will be successes. Others will be failures.

That’s the way it’s supposed to be.

Not because Adri is special………but because that’s the way it works.

All children are special.

And as long as we have teachers like Adri’s (Ms. Paty and Ms. Maruha) — those with passion and compassion for children — our kids can embrace their uniqueness and realize it’s o.k. to be a little different.

It’s o.k. to hope for better things.

That’s what happened to me today.

A renewed hope that Adri will be happy despite her challenges.

That she won’t feel the anger and bitterness I sometimes feel.

That’s she won’t live in fear.

Because after her performance today, there’s little doubt that better things are yet to come on this path God has chosen for us!

Father’s Day and Futbol – Welcome to Peru!

This will be the first Father’s Day I spend in Peru.

I’m accustomed to sunny, summer days in Colorado.

This year, I trade that in for a cloudy and gray winter day in Lima. There’s a chance the sun will come out, but I won’t hold my breath.

I don’t want it to sound like I’m complaining — but I am.

Santi's Father's Day Celebration

Santiago wearing my shirt and tie! His note to me: “I love my father because he makes me laugh, he takes me camping and he protects me when I sleep.”

Seriously though, I know it’ll be a great day!

If I were a futbol fan, it would be an even better day.

With the World Cup starting this week, several fathers I’ve spoken to will spend Sunday in front of the television watching Argentina play Bosnia (and the other two games being televised).

For the next month, all things in Peru will revolve around the Cup, or so I’m told.

Productivity at work will decline, similar to March Madness in the states. Restaurants and bars will be filled with fans.

Fans of all ages

This week, Santiago’s preschool put on a show for all the fathers.

The theme for the show?

Of course…….futbol!

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Santi waving to me in the crowd!

Each class represented a different part of the world and performed a dance with music from that area.

It was truly a good time!

The kids were so excited to see their fathers and show off their dance skills.

In between each skit, the teachers asked the fathers questions about past World Cup competitions:

  • Who won the last World Cup?
  • When was the last time Peru was in the World Cup?
  • When was the first World Cup played?

I could only sit back in awe as every father shot his hand in the air to answer the question, with the hope of winning a prize.

I was clueless.

At least I have four years to bone up on World Cup trivia for the next Father’s Day presentation at my kids’ school.

HAPPY FATHER’S DAY, Dad………and to all fathers out there, futbolers or not!

[HERE’S SANTI’S SKIT. IT’S A BIT LONG BUT HOPE YOU ENJOY IT!]


 

A Small Step Toward “Normal”

It’s hard for me to think about Adriana going to school by herself, without her mom or me by her side.

The thought of her in a classroom with a dozen or more kids — without someone there to lift her up if she falls over — terrifies me.

But of course, it will happen. She will go to school.

She will succeed and make new friends. She will fail and cry.

She will be strong. She will be weak.

She will be a kid.

Her first class

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Adriana’s art class starts with story time. Cushions at her side and back keep her from falling.

This week, we took what I think is a huge step in Adriana’s life.

Gaby enrolled Adri in a summer art class at one of the local libraries, and Monday was the first session.

Adri’s first “class”.

During story time, the kids gathered on mats on the floor. Gaby sat Adri at the front and placed cushions at her side and back to keep her from falling.

Isabella, who is a classmate of our son Santiago during the regular school year, is taking this same class. She sat next to Adri and was very protective of her.

It’s a wonderful feeling when other children see Adriana and want to be near her.

Kids seem to have a natural kindness about them and a desire to help when they think help is needed.

Adri was attentive during story time. She didn’t participate when the teacher asked questions, but that’s o.k.

I have a sense that soon, the teachers won’t be able to keep her quiet.

The art project

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Adriana and Isabella getting ready for their art project.

Next, the kids moved to the circular tables to do some artwork.

We have a positioning seat for Adri called a Seat2Go. It’s designed for special-needs children, and has a belt that straps around her chest to keep her from losing her balance.

She sat patiently and participated without a problem.

The project involved some painting, as Adri brushed glue onto a picture and then applied glitter on the glue. With painting, she exercises her fingers, hands and arms, which improves her fine motor skills.

Slowly letting go

Gaby was present the whole time, but she tried to make herself as invisible as possible.

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Adriana applying glue to her picture.

Adri would look to her occasionally, but Gaby was sure to direct her attention to the teacher if she had a question or problem.

Adri was fascinated when she asked the teacher a question, and the teacher actually answered her!

Her mind, which is in no way affected by spinal muscular atrophy (SMA), was no doubt absorbing every experience (as tiny as they may seem).

What’s most important is that she’s now part of a group of classmates working and learning together.

We’re starting her off slowly – just two days a week for a couple of hours at the most.

Adri does get tired, even though the physical work seems minimal. Her muscles can only take so much at a time.

Signs of strength

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Adri showing off her painting from today’s second class.

With a summer full of therapy and activities, she’s up to the challenge, and she’s showing signs of greater strength.

Just yesterday, I was holding her with her back against my chest.

I placed her feet on a short wall and told her to push with her legs.

Normally, I feel a slight push, but this time she pushed strong enough to make me take a step back.

Seems small, I know.

But I pray for the day when she knocks me over!