Kneeling and Standing

We, able bodies, take positions like kneeling and standing for granted.  But, when you can't do those things, and then begin to...and do it well...wow.  It's pretty awesome. 

Today I caught some video of the Lil' Samsquatch kneeling and standing.  Yes, she's in her suit so that helps, but not until today could she hold a position this long.  She's a champ.

As a side note: Brady is the volunteer today.  I find Sammy growing an affection with him -- and it occurred to me that he looks like David!  As in, cousin David.  Family, any of you agree?  Susan, could Brady be your son?  I think so.

Friends

Last week I was able to meet up with some friends.  I was so glad I could.  These are little kiddos I've been wanting to meet for a long time (though there are still so so so many more that I want to meet -- and their moms!).  It was a nice, warm day at the park in Provo.  These are some amazing moms and some amazing kids.  My heart just feels so full thinking about them.

Chrystal, Hunter, and Kaitlin 

Hunter

Chloe

At the swings.

Callie, Chloe, Tara, and Sammy

Chloe and Samantha actually became quick friends.

All of the kids -- Chloe and Sammy gazing at each other, Callie trying to be patient, Kaitlin looking a bit bored, and Hunter just waiting it out. :)

Me and Sammy with the beautiful mountain backdrop.

Jumping Jacks

Well, I'm a little behind on things I wanted to write about.  Oh well.

Yesterday, after therapy, we needed to go have some fun.  We needed to just ~ have fun.  One of the therapists at Now I Can gave me some discounted passes to a place called Jumping Jacks not too far from here.  We went, and we loved it!  Then we hit Cafe Rio.  It was a pretty great afternoon.

Sammy was sooo happy!

And our little dare devil Callie -- she was all about doing it herself .  It was pretty fun to watch her.

So, I like this picture of Sammy because you can really see her standing straighter.  Sometimes I still think "Is this therapy doing anything?"  But then I see this and realize...look at her shoulders pulled back, she's standing straight up, etc.  She may look a little crazy, but she's standing straight.

Aw.  Sammy's so cute.  And ... my hair is brown.

So.  Much.  Fun.

This was just what we needed.  A day of fun.

This is moments before Marcus drops her down the big slide.  She loved it.  Check out the video.



I think this video is hilarious.  Samantha loved the slide, which is great.  But it's Callie that makes this so fun.  She runs up and tackles Sammy after she gets down.  Ahhhh sister love.  Sometimes I'm reminded of just how perfectly imperfect our family is.  I love that Callie and Samantha have this bond that only true sisters have.  It doesn't matter their background...these 2 are sisters ~ in every meaning of the word.

Almost Over?

I cannot believe that the time has passed so quickly. When we arrived, I thought, for sure, that these 3 weeks were going to feel like very long THREE weeks. But, the time has just flown by for me.

Samantha is doing well. She still cries but tolerates a bit more each day. I've wondered if she had a different problem -- like instead of having super tight muscles she had really low muscle tone -- if that would make the experience less painful and difficult for her. I hate to hear her cry and be upset. But, I do know it's good for her. And, admist the cries, she still smiles. She still stumbles when she walks, but overall, I can see that she is more comfortable in a more erect posture. She stands taller and straighter. And, if you think about it, babies learn to stand before they start taking those first steps. So, I'm good with her getting a solid standing posture.

I just can't believe it's Tuesday of our last week. I feel so blessed to have been here. Sergio has a gift and I am grateful he was able to work with Samantha. I look forward to April when we hope to return.

Week 2 Begins

I can't believe we are starting our second week here at Now I Can.  Seriously?  I guess that means we still have 2 full weeks, but still.  It's crazy.  She's doing well.  I'm finding myself going back and forth about how I'm feeling about her progress.  I see progress, and I feel good about it all...but I still wish there was more.  Ya know?

Yesterday, I expressed my feelings to Sergio and Jordan.  I want them to always know how I feel about this stuff.  It's important to me...and I think it's because they have made it so clear that it's important to them.  Don't you love people like that?  Anyway.  A BYU student volunteer was in the room with me while I was telling them about how I was feeling; she said something that rang so true.  She was able to perfectly articulate what I was feeling.  I think.

I can't tell you what I expected from this therapy, other than to help her.  I didn't have any definite thing I wanted.  So, I wasn't sure why I was feeling discouraged.  That's when Smart Volunteer (I don't know her name, but I'm giving her the title "Smart" -- so hopefully that makes up for a lack of name) said, "Maybe it's more that you expected the unexpected.  Huge things happen here, so maybe you couldn't put your finger on the one thing you wanted her to do, but you were looking forward to seeing that unexpected progress."  Boom baby.  That was it.  That is it.  And I feel silly about that.  But seriously.  I know I mentioned it before, but the little boy here with us couldn't walk.  Could. Not. Walk.  One week later, he's walking with a walker and crutches.  That is unexpected to say the least.  Samantha's progress has been slow and "normal" and what's exciting about that?  Other than the fact that by small and simple things, great things are brought to pass.  So, every time I feel a little ho, hum, I remember that this is a stepping stone.  Even the progress she has made is better than the progress she was making before (in terms of speed).  I'm grateful and need to just focus on the good.  Focus on the good.

Samantha with Sergio ~ pictured with Smart Volunteer

This is her tired face.  Physical therapy is no easy task, and after a weekend of no therapy, she's wasn't overly excited to come back and work...but I still think she's a champ.

Family and Friends

One advantage of having therapy here in Utah is we've had the chance to catch up with family and friends.  This past Saturday we headed to Cafe Rio.  I love Cafe Rio.  This was an exciting occasion.  In addition to the food, we saw Spencer (who I don't think I've seen since our wedding!), Eric (cousin), and his...wait for it...fiance (YEAH) Angela.  (They became engaged a few hours after we had our little reunion.  I'm so happy.)  It was fun to see them all and eat, talk, and hang out for a bit.  I wish we could do it more often.

Bryan, Samantha, Spencer, Eric, Angela, Callie, Marcus, some pregnant-looking lady who people confused me with

After Cafe Rio, we headed to Bryant and Taeko Smith's.  Bryant was helping us with our computer and Callie and Rionna started playing.  (I hope I'm spelling names correctly here.)  Callie and Rionna played well together...aren't they so cute together?  We're going to try to get together again sometime before we head back to California.  Callie would love that.  

Freakin' Out Friday

Friday.  Oh Friday.  Sammy actually did better, in general.  I was able to be in there with her for a larger part of the session, which was nice.  But, because of that I didn't get to blogging about the day...but priorities here, ya know?  

As great as she did, for some reason, after therapy was over, I kind of freaked out.  Not in the way that you would think...all spazy and crazy like.  No, it was more of an inner turmoil thing I had going on.  She came home with this tape all over her body...kinesiotape.  We've used it before and I think it's good stuff.  It was funny because it was on her fingers, and I thought of Wolverine.  At first, I thought it was totally cool -- all hot pink therapied out.  But when I got in the car, something hit me.  It was the weekend.  We had just finished our first week of therapy.  We are 1/3 done.  And, what progress has she really made?  We only have 2 weeks left.  And as much as I've told all my friends and family that my expectations weren't huge, deep down, I think they were, even though I was unaware of it.  I have heard all this wonderful stuff about Now I Can, and so, even though I didn't know exactly what to expect, I think my expectations of .... something... were high.  Hello Jenny.  It's been 5 days.  But still.  I panicked a little bit.  And on top of that, Sammy was looking a bit -- ohhh, strange.  My beautiful beautiful daughter had hot pink tape all over her body.  She no longer looked like a miniature superhero.  She looked like a special needs child all taped up because her body doesn't work like it should.  

I was sad.  

I got home with Sammy, tried to be chipper, but I chipper, I was not.

I cried. 

And then I took a much needed 3 hour nap.  Thank you Marcus.  (Callie's been having what we think are night terrors, and it's really starting to take a toll on me.  But at least it's not bothering her.)

Later, Friday night, I was talking to Steele and Ciera (who we're staying with).  Steele was asking for more info about the therapy and I gave him all the answers I knew.  I even went to our blog here so he could see the suit and blah blah blah.  It was then, during that conversation, that I realized how great she really has been doing.  I mean, seriously.  In ONE week, she is now standing straighter and extending her arms further.   In FIVE measly days!  Do you know how long we have tried for that to happen?  YEARS.  And in five days, she's using her body more efficiently and correctly.  That's not nothin'.  How can we possibly tackle the big stuff if she can't master the (what appears to be) smaller stuff? 

So, I went to bed happier.

And I'm ready for tomorrow. 

This is one of my favorite pictures of Samantha during therapy on Friday.  Just chillin'.

I told Sergio I'd try to keep Samantha's hands out of her mouth, and he said not to worry about it.  He knew it wouldn't last through the weekend...but that tape lasted awhile.  And, now that I'm looking at this picture, I can tell a difference in Samantha even sitting in her carseat.  She's usually more curled forward.  She looks like she's sitting in there so big and tall.  It's kind of weird to see actually...but dang cute too.

So, mid-rolling over...just to see how taped up this girl really is.  Hands, arms, back, inner thighs, feet, and ankles. 

You'd think she had weak ankles and was off to play a soccer game or something.  But, I think this taping on her feet actually made a difference in helping her get her ankles to the ground.  We'll see how next week goes, but Sergio is pretty confident we'll add some more range of movement down there in those there ankles...sure would be nice.

Thursday Family Fun

Our days here in Provo are more than just therapy.  Yes, it's true.  The purpose of this little get-away was for Samantha and to attend Now I Can.  But, when will we have a chance to spend 3 weeks together like this again?  Honestly.  Once Marcus starts working again, this will not happen.  (Which makes me wonder about doing round 2 of Now I Can.)  We're trying to make it fun for Callie -- and us -- so we do as much as we can after therapy.  Yesterday, we hit BYU's Museum of Paleontology, the stadium's Farmers' Market, and the BYU football stadium.  

The museum itself is quite small, but I thought it was interesting.  It was actually the perfect size for Callie's attention span.  We taught Callie about the different teeth and she became pretty good at identifying carnivorous vs. herbivorous?  haha  Seriously, how do you say that?  I'll go the easy route and just say that she could distinguish between carnivores and herbivores by the time we left.

Marcus was most impressed by this giant sloth.

And this large head...MUCH larger than Callie...shocked me.  Can you imagine this thing coming at you?!

Then we went to the Farmers' Market.  They just started one that is located at the stadium parking lot.  I was excited to go because, for whatever reason, I love farmers' markets.  Marcus thinks it's silly that I love them so much.  But, there's something about people growing their own stuff and selling it...meeting the vendors...I just love it.  Marcus thought Callie would like getting a face paint, and she did, except she got it on her hand and arm.  A fish.  With bubbles.  And glitter!  She loved it.

This picture (below) was so startling when we were going through all we took at the end of the day.  Ah!  Callie.  Don't eat me!  She was supposed to be showing us her painting, but she looks, well, scary.

The stadium as open, so we went in and walked around.  No one seemed to care, so we stayed longer.  This is the closest I'll probably get to a football game while we're here.  Marcus keeps telling me I can get tickets, but that would just be complicated with Samantha and Callie.  Anyway, it was fun to go through the stadium.  It brought back a lot of good memories, and I got really excited actually.  I could have sat there all day.  That makes me weird I'm sure.

And hello, these seats are definitely the way to go.  I've never sat in these before, but they are the best.  I can imagine a much more comfortable football viewing experience with these blue babies.

I took a series of pictures of Callie rolling over the benches.  At first I thought it was really funny because it looks like she's falling...that is, until she really did fall and hurt herself.  Oops.

I'm really glad to have gone to BYU.  I really love it here.  While we were sitting on the bleachers, I looked over and saw the flag, the stadium, and the gorgeous mountains.  My sophomore year, some friends from home saw a picture of our stadium and asked me "Does it really look like this?!  It's gorgeous.  It's just unreal how beautiful it is."  I didn't appreciate it.  At the time I felt some cougar pride, but aside from that, I was so used to the mountains as my daily backdrop.  Yesterday, I took a moment to breath it all in.  It really is beautiful here.

Thursday Therapy

Samantha sometimes does better when I'm not in the room with her.  So, I'm often taking pictures behind glass...but today, I was able to get some shots of her without a glass filter.  Nice.

 Nice half-kneel position.

Yes her pants are hanging that low.  I couldn't keep them up!  Standing pretty well.  It would have been better if she wasn't chewing her fingers...then her shoulders would have been more relaxed again. 

Come on girl.  Tough it out.  You can see Sergio is pushing her hand on the ground with her fingers out.  Not a comfortable position for Sammy, but a good one nonetheless. 

Ah.  Now that's the girl we know and love...only moments later. 

I thought this was funny.  At the end of the day, Sergio had her walk back to me.  She was doing well except for the fact she was leading with her head...so she was kind of sticking her head out forward.  Sergio took her head and held it back and she started giggling.  It was cute.  A good way to end the day...giggling.

See Her at Now I Can

Since we've been here, I haven't been able to upload any video.  Grrr  Until...today.  Sergio suggested I upload it onto their computer...then I'll just delete it off.  Anyway.  I plan on making our own little video of all of our stuff after the 3 weeks, but for today, you get to see Sammy at Now I Can...in a few glimpses.

In this first one, she was being fitted for her suit for the first time and getting ready to take off!




This is also during that first day evaluation.  She was sitting in the neurosuit doing some small tasks so they could see how everything fit and worked out.  I love the people who work here.  I really can't say enough.  They are so so so good with kids, and that's important to me, obviously.  It's a love/hate relationship for Sammy.  She doesn't like having to work hard and doing the uncomfortable things, but she loves them too.  It's cute.



Finally, here's some footage of her in the spider cage.  I have to ask again how this works because I know I'll explain it wrong, but from what I understand, she is perfectly centered in there.  With the cords in each direction, it is maintaining stability that she doesn't naturally have.  So, as she works on exercises in there, she is gradually gaining better control on her own.

Friendz

When we knew we'd be coming to Utah to attend Now I Can, there were a few things on my "to do" list.  Among the many things, I am going to catch up with my awesome, super radical friend, Marci, who I don't see nearly enough.  I am going to get together with all our family in Provo -- more than I realized.  I am going to get my hair cut and colored.  And I am going to meet some fabulous women who I call my friends, but who I've never met.

Yes.  You've read my correctly.  Over the past year...maybe a bit more?...I've been a part of Kidz.  I love it.  I have been strengthened, uplifted, and motivated by all who have participated on this blog.  And, I have felt very honored to be a part of the Kidz Krew (a group of us who are regular contributors).  So, I really wanted to meet my friendz from Kidz.  I instigated the idea for a little Ladies' Night Out...and Ladies' Night Out was had.  Last night.  Gardner Village.  Awesome dinner.  Incredible company.  I knew it before meeting them, but I now, face to face, I felt their spirits, strength, and love.  It was so fun...I stayed out too late and ate too much...but it was very worth it.

me, Chrystal, Jennie, Tara, and April

It's a Hard Knock Life

It's official. Samantha hates life. So much so that I had to leave because I found myself tearing up. I know this is good for her, but it still makes me sad to see her so sad and so uncomfortable. Remember what I wrote a few days ago about how it's ok to be unhappy? Forget it. I was temporarily delusional. What was I thinking? (sigh) And let me clarify, she doesn't just hate life, she really really really hates life today. Fabulous.

Wednesday the Worst

On Monday I was warned that Wednesday is typically the worst day of therapy.  They've been here 1 full day and realize "I don't want to do this."  They fight more and cry.  But today, I think Samantha actually did better.  She's been more compliant over all, and we're already seeing her respond to the therapy -- meaning she's standing straighter on her own out of the suit.  That makes me happy.  

Of course she starts the day with stretching.  And, she did much better this time.  Then the suit came on.  Today Jordan, a different volunteer, came and Samantha seemed to just love him.  She would frequently look up at him.  It was cute.

While Sammy was in her suit, of course they practiced different positions.  This includes sitting, in a kneel position, and of course standing.  In all positions she is showing improvement.

After a snack while in her stander, she did some more muscle type things.  Like how professional I am about it?  And she continued to happily gaze up at Jordan.

Samantha has always hated the ball.  She hates being stretched like this, but she has tolerated it rather well.  Hopefully when we get back to California, Kathy (her regular PT) will be able to get Sammy back on the ball so we can maintain the progress here.  I've never seen Samantha sprawled out like that.  Fantastic.

In the spider cage again.  They spent more time in here today.  Yesterday it was just sitting.  Today, they did kneeling, kneeling on 1 knee into a stand position, etc.  She's just so cute.  I can't take it!

This therapy business is rough.  It's tiring.  It's hard work.  But she's doing well.  I'm proud of her.  We still have many days ahead of us, but her strength will improve and I'm confident that as these things become easier for her, that she'll actually enjoy some of this!