Second Full Day

Yes, Tuesday was Sammy's first full day of therapy.  Full day = 4 hours.  So, it's not as bad as it sounds.  But, it was still rough.  She was stretched, in many ways.  And she was forced to use her body in ways that have never been used before.  She complained.  And sometimes she complained rather loudly.  But, she was also fun and delightful at moments...the moments when she wasn't being put to work.  To me, however, that was just proof that there was no real harm done.  She can complain all she wants, as loud as she wants, but then she was perfectly fine when things were finished.  So, she can tough it out.  She's a tough girl.  And I can be a tough mom.  (sniffle, sniffle)

Her morning started with stretching.  Seriously?  Why hasn't anyone ever suggested I stretch her?  And, why hadn't I thought of this on my own?  It just seems natural.  We stretch before we exercise (or should anyway).  And for Sammy, she's always tight.  So stretching is good for her.  She was mostly happy until they stretched her arms and shoulders, back and neck.  But this morning she did much better with it.  Jordan  worked with Sammy today.  She's so great.  And Sammy seems to like her smile, soft voice, and gentle touch.  Nate, who is the office manager (?), also came in to assist and help out.  He's also so kind.  I mean, seriously.  Everyone here is so great.  They all love what they do, and that probably helps a lot.

WAIT!  What is this?!  I just glanced over at Sammy doing therapy (I'm in a private room that I can look through the darkened glass), and she is being held down, stretched, and she's SMILING?!  What is this?!  There are still miracles today, people.  Ok...back to yesterday.

When it was time for the suit, she was only mildly hesitant.  She was basically cooperative.  Many have asked about the function of this suit.  I found out a little more yesterday.  It all began quite a few years back with NASA.  They found that their astronauts were coming back with weakened bones.  Our bones, and body in general, become stronger as we work with force and resistance.  This is why resistance training is good for our bodies and to prevent osteoporosis.  When the astronauts were in space, there is no gravity, so they weren't getting any resistance...at all.  They came back home, and their bone density had decreased.  So NASA developed a suit that they could wear while in space that would provide resistance so they could maintain proper physical health.  Now, the concept of that suit is what the creators of this suit were inspired by.  What if the right resistance was placed on the right part of the body that needed it, in order to gain proper strength.  Proper strength...meaning...using that part of the body properly.  I know I'm not explaining this perfectly.  But I'm trying here.  With this suit used during therapy, which was originally designed in Poland, they found that they were able to trigger parts of the body that hadn't been working properly before...and weaken parts of the body that were overused and actually causing problems.  And the best part of it all, is that this suit can be adjusted per person, per use, per whatever.  It's individualized.  And this is what Samantha is wearing each day for part of her therapy.

Next Samantha went into the Stander.  I don't know about this for sure, but I'm not going to push it.  We'll see.  I did think she looked kind of cute though.  They strapped her into a...thing... There was some foam rolls placed behind her knees and at the small of her back.  This is supposed to give her the feeling of how we would naturally stand.  She stood there while I fed her a snack.  Even "breaks" are used for work here.

Next on her agenda was the Spider Cage.  Now, Sergio explained it all to me, but I'm not sure if I could quite explain it again.  I do know, however, that one of the goals here is to change Samantha's center of gravity from her thorasic area (upper back) to where it should be...lower back (2nd vertebra of her sacrum).  This spider cage makes her perfectly centered.  Apparently it feels pretty cool.  They worked on sitting it in with her today.  At this point, she was pretty ready to be done, but she was still ok.  Just whiny.

And then, to finish up the day, Sergio did some final work with her.  Some movement things, etc.  He did apply kinesio-tape to her back and shoulders which we've used before in Spokane.  It's light...just tape..but the touch, alone, on parts of your body will trigger responses...like "use me!"  

The rest of the day was pretty laid back.  Samantha was pretty exhausted.  We hung out with Bryan at his apartment for a bit, then came home and hung out, played in the yard, and had dinner.  Marcus thought Samantha already looked like she was standing straighter.  I agree, but we're both unsure if we should say that too early.  I mean, aren't we jumping the gun a little bit on that one?  Probably.  But...maybe not.

Callie playing ping pong with a teddy bear.

Dinner time!!!

A new "cup" I bought Sammy.  I think this looks a little bit more "big girl" than those sippy cups with a straw that she can chew to bits.  This works and she can actually hold it a little better.

Final play time before bed.

Today seems to be going well.  She's let us know her opinions, but she's been overall happier.  That makes me happy.  See, sometimes total unhappiness doesn't have to last long...just until we start to figure things out.

The Veganist by Kathy Freston

Veganist: Lose Weight, Get Healthy, Change the World by Kathy Freston


My rating: 4 of 5 stars


This was good. Informative. But having already read The China Study, I felt much of it was repetitive. What I did like about this book was the personal stories that supported her claims. They were interesting and it made it real to me. What is also helpful is that she offers suggestions on what to do with sample menus. It was good. I would suggest anyone read it...especially if you want the same information found in The China Study without having to read thick language.




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It's OK to be Unhappy

Sammy's in therapy right now.  She's working, but I'm the one taking a break.  The morning started off well with some stretches.  She was pretty good about that.  But once stretching was over and the suit went on...it all went downhill.  She's been very unhappy.

But it's ok to be unhappy.

And here's why.

Samantha's body doesn't work as it should.  For years now, she's been functioning on dysfunction.  She walks, but she does so with tight arms, bent over body, and almost every muscle in her body flexed.  Some would say, "Who cares?  She's walking isn't she?"  True.  But, with every step, every movement, she is cementing into her brain what is wrong.  And then, everything else becomes more difficult for her.  It's not about walking.  It's about understanding her body and her world around her.  Being able to relax and use her arms to explore her world, to pick things up, and to hold our hand.  It's about being able to be more self-sufficient and be able to rely on herself for her needs -- even if, she is dependent on us for her care, there are things that she can learn to do, correctly, like drink from a cup and get on and off a couch.  I know that she can do those things.  She just needs to relearn how to properly move her body...and that may be uncomfortable for her.  She may be unhappy about it for a bit.  As her mom, I've decided that's ok. 

I was thinking about that this morning and I thought about how true that is for us all -- or maybe just me.  Sometimes life just kind of stinks.  We can feel like we're doing everything right...we're attending church, praying, reading the words of the prophets...yet we aren't moving like we should.  For whatever reason.  And, maybe it's because we're functioning on slight dysfunction.  We pray, but it's not sincere.  We read, but we don't study.  We are kind, but we lack charity.  And changing may be uncomfortable.  We may be unhappy.  And that's ok.

When I was in highschool, I had to adjust.  I had to change my group of friends.  I knew it.  And I did.  It was painful.  It was hard.  I was unhappy.  But, it was ok to be unhappy because that's what needed to be done.  I was still friends with them -- just didn't hang out after school -- and I was able to meet other friends who I could hang out with all the time. 

Am I saying that if there is ever a problem in our lives it's because we aren't doing what we should?  No.  Of course I'm not saying that.  But I kind of am, I suppose.  In our adjustment to becoming who we are meant to be -- who we ought to strive to become during this life -- it may be uncomfortable.  Our arms may get stretched further than we let them stretch before.  We may need to open our hands while we crawl instead of keeping them in tight fists.  But the joy is that as we do so, and as unhappy as we may be during the process of becoming, we will begin to naturally stretch our arms and open our hands on our own.  We will be able to do more. 

And we'll be happy. 

First Day of Therapy

The morning started well.  The girls slept in until 7 am....and we got up and made some oatmeal...breakfast of champions.  Samantha and I left the house with this gorgeous view

We got to Now I Can and things started off great.  Samantha loved the therapy room.  She was running all over the room, happily yelling and smiling.  But then...duh duh duuuuun....came the suit.  These pictures don't  show the crocodile tears that were ever flowing.  She was fine though.  It's hard for her to move in ways that she has never moved.  Pulling her shoulders where they are supposed to be, for one, is a new feeling for her that is, well, uncomfortable.  Sergio was so good with Sammy right from the beginning.  He has Sammy do what she needs to do, but he does it so lovingly.  Often, Samantha would be crying (or screaming), and then she'd stop and look at Sergio...kind of smile...and then turn her head and continue crying.  It's a love/hate relationship that I'm sure will sprout into something deeper.  At least, that's my hope.

A moment when Sammy stopped crying to gaze up at Sergio.

A happier playful moment.

I loved this.  Ok.  So the cords pull her body into proper alignment.  Because  Sammy  tends to stand on her toes most of the time, there is a cord that attaches from her toes to her knee, pulling her onto her heels.  I was pleasantly surprised.  Without her DAFO's, she was standing so well.  It just gave her enough pull for her to feel it and want to stand correctly...and feel secure doing it.

I'll have more to report tomorrow after she has her first full therapy session.  Today was just 2 hours to get her fitted and evaluate where she's at...create a plan for the next 3 weeks, etc.  Sooooo....come back tomorrow for a more on the therapy front.

Since we were done today by 10am, we decided to go to the Hogle Zoo.  One of the coolest experiences of the day happened while at the zoo.

Callie sitting in an egg.

Sammy the turtle.

Callie chasing a rooster.

I love gorillas.  I just do.  I always have, ever since Gorillas in the Mist back when I was in elementary school.  It's true.  No, I loved gorillas before then, but that movie solidified my feelings that these animals are amazing.  It's the mix of sheer strength and power with pure tenderness.  I could watch gorillas all day long.  Seriously.  If that makes me weird, I don't want to be normal.  Ok, anyway.  We went into the gorilla building and started watching this big silverback.  He was sitting in against the wall, watching us.  Then, he got up, and slowly walked over to Callie.  There were 5-6 other kids there, but this gorilla approached Callie.  He came just close enough to the glass that he was almost touching it, but not quite.  And he stared.  I had a small surge of fear pass through me.  I reassured myself that this glass was strong enough in case Callie startled him in any way.  It seems so simple.  Sure, a gorilla looked at her, but it was intense.  It was as if he was studying her.  I think she was nervous at first, but then as I talked to her about him, she seemed more comfortable.

Just as I took this picture, Marcus took Samantha out of her stroller and placed her by the gorilla.  He slowly shifted from Callie to Samantha.  And then, he looked at Sammy, and again, slowly, lowered himself so he was eye to eye with Samantha.  It was so. cool.  And he just stared.  And stared.  And stared.  Then he left.  Now I know this may seem silly, but I wondered...why is he so interested in Callie and Samantha?  And what was it that piqued his interested in Samantha, so much so that he crouched down lower to be eye level?  It wasn't threatening, yet it was intense.  A sense of true curiousity.  A while back, there was a little child who fell into a gorilla exhibit.  The little child was knocked out.  The gorilla approached the boy and held him safe in his arms until help came for the little boy.  These animals have a tender side, and I wondered if this large silverback noticed something different about Samantha and tried to figure it out.  Callie...she's just cute so he was drawn to her.  Who knows?  I don't know.  But, it was cool.  Everyone there just watched this gorilla stare into the soul of my children.  Awesome.  I only wish this picture had turned out better.

It was a fun day at the zoo, but we're here for therapy and tomorrow...oh tomorrow...will be an interesting day.  I want to make sure to post everyday because I don't want to forget any of this.  I still can't believe we're here, doing this, actually here for therapy.  On the side, we're enjoying a family vacation -- spending time with family, friends, and taking these side trips.  It's fun.  And hopefully, the tears tomorrow in therapy morning will be minimal.

Sunday is Funday

I admit.  I wasn't really looking forward to today.  Is that bad?  I mean, it's Sunday after all.  Our day of worship.  A day of rest.  A family day.  But, I just wasn't sure how it'd all go down today, being here in Utah, not in our own place, etc.  True, I was tired, so the whole day of rest thing didn't really happen...but nonetheless, it was a great day.

Morning came a bit early.  I can't complain about 6 am, but I will.  It was too early for me today.  I got Sammy and she joined us in our room until I decided to actually get up and shower.  We went to church with Bryan today.  It started off great, but Sammy was a bit squirmy and had to get up.  Marcus took a shift out in the hallway of the MARB (going to these old BYU buildings is so crazy), and then I took a second shift.  During that time, I found a huge mirror in the bathroom that Sammy loved.  So, we hung out there for awhile.  I met some girl there and we talked for about 1/2 hour about her 12 year old sister who has Down Syndrome.  It's funny who you meet in a bathroom and what stimulating conversation can take place.

We left after sacrament meeting.  There was no way Callie and Sammy would make it through a Sunday School class of a singles' ward.  Nope.  No nursery.  No staying.  Na ma'm.

We came home and had a little lunch.  Callie buried both she and Sammy in a blanket and pretended to have a sleepover.  That's always a fun game.

But the fun didn't stop here.  We've always talked to Callie about how she was sealed to us in the temple, and now, we happen to be staying extremely close to that same temple.  So, we went down to the Provo temple and walked around.  Callie enjoyed irreverently running up and down the hill (I told her she could continue to do it if she didn't scream), play in the fountains, and push Sammy's stroller.

Most of the time we were at the temple, Callie just wanted to push Sammy in her stroller.

Frequently, Samantha would turn around, looking at Callie and then us, then Callie...as if she were thinking, "Really?  You think this is a good idea having her push me?  Really?" 

We took a family picture, because, why not?  (Yes, we got a better one than this, but I like this one better because Pirate Marcus makes a guest appearance.)

Bryan met up with us there at the temple, then we moved on to Rock Canyon Park.  My memories led me to believe it would be much more fun than it was.  Perhaps it's because at this point I was kind of hot and really tired.  But, it was nice to run around.  Sammy wandered around and fell in some overly wet grass patches.  Nice.  We all took a turn running up and down one of the huge hills there with Callie.  And Marcus went down a wet slide...bummer.  Don't you hate when that happens?  "Sure sweetie, I'll go down the slide with you?  What?  Ok, I'll go down first.  ahhhhh man."  Then you have wet pants.  Tyler and his fiance, Lauren, met us there and we chatted for a bit.  Callie met some friends on the playground and was occupied for quite some time.  Sammy was just content chewing on tanbark...don't worry, she didn't swallow it.  No, I'm kidding...I mean, she did chew on it, but we did intervene when we noticed it.  We're only semi-neglectful I guess.  (yikes)

We came back home.  Cooked some dinner.  Did some more pretend sleeping.  And played ping pong.  Sammy was having a good time.  We are staying with Ciera and Steele.  They are so great.  They are fun and kind and love our kids.  That's nice.  Plus, they have a really cool niece and nephew.  It was a fun night.

Though it may not look like they are thrilled in the picture below, they were all laughing so hard!  They were pretending to go to the bathroom.  It was so fun to watch them.  And they were all having so much fun with Samantha.  It's not everyday that kids feel comfortable playing with Sammy.  They aren't sure about her sometimes.  But these kids, with the help of Callie, figured out how to play with her.  It was really cool to watch.  This little girl, Brooklyn, is the same age as Sammy.  I explained that it was time to settle down.  I was going to get Sammy's medicine and her pajamas on.  Brooklyn asked what the medicine was for, and I explained that she has seizures and tried to explain what that was.  She paused, thought, and said, "I know what you can do.  Jesus can heal her.  He heals people and then her brain won't do that."  My eyes filled up with tears and I told her, "You're right Brooklyn."  That's all I could say.  I wasn't sure how to explain that it was more complicated than that.  And then I thought to myself, it's not really more complicated than that is it?  It was an eye opening moment for me.  It was sweet to hear that from a 5 year old, but it was also a good reminder of who will be healing her from all her ailments and impairments one day.

I spent some time talking with Ciera tonight.  She's so sweet and I really enjoyed our little discussion about a million different things.  I came downstairs and put Callie to bed, all along thinking that this was a really fun and great day.  I spent time with my family, I met new friends, I felt the Spirit, and I got to close the day with Callie saying "I love you to the moon and back Mommy."