Thursday, September 29, 2011

National Microcephaly Day

It's true.
They have one.
National Microcephaly Day
is today
September 30

This is what Microcephaly means to me:











A little over a year ago, a friend asked me to be a guest poster on her blog.  I was to answer the question "How do you do it?"  I wrote about Microcephaly and Motherhood.  You can read the entire article, but it's the last paragraph that really sums up my feelings about microcephaly.

~*~*~*~*~*~

How do I do it? Many days I can’t work on my projects. Some days bedtime still seems too far away. And my faith has definitely waivered. But the number one thing that keeps me going is the little girl with big blue eyes and rosy red lips. Samantha’s giggle warms my soul. Her smile makes my heart do little leaps. Her eyes tell me stories that I won’t hear in this lifetime. Her stumbling walk and awkward movements sometimes actually bring us great comic relief! She is clever and funny and really a joy to be around. Everyone loves this little girl! I want to be with her. I want to be by her side as much as I can. I want to be her Mom. I want to be her advocate. I want to tap into the potential within her and make her shine brighter than she does now. I want to teach her. I want to hug her. I want to kiss her little cheeks. I want to struggle as I put curlers in her hair. Tonight, I didn’t want to have to rock her to sleep, but as I did, I didn’t want to be anywhere else. I want her to know, even if she doesn’t understand the words “I love you,” I need to be certain that she gets it…that she feels it. I want to experience it all with her because she is my earthly angel and I’d rather laugh with her or struggle and fight than not have her by my side. Microcephaly and motherhood. Sometimes it really doesn’t seem so bad after all. Truly.

That may not be how I do it, but it’s certainly why I do it.

~*~*~*~*~*~

If microcephaly brought me this little gem, I'll take it.
I'll take the whole package.


You can find out a little bit more about Samantha's microcephaly on my Kidz post.

Wednesday, September 28, 2011

Proof of Progress

Yesterday, after walking around campus and being sorely disappointed that the t-shirt Marcus wanted was sold out, we went to a park.  While we were there, we really began to notice Samantha's improvement.  In particular, her standing has become more solid and straight.  I was impressed that, even though she had to readjust her stance and move a bit, she was able to do it without moving all over the place, and she was able to get right back into position...to feel where her body should be and get there.  She has a lot more progress to be made, but she's doing well.

This first video is from our first weekend here...before she started therapy.  We were in the Eyring Science Center and she was walking around.  I thought I should get some "before" video.  You can really see how she hunches over and walks, kind of in an out of control way...the drunken sailor....moving solely on her momentum.  She leans forward and needs to swing her legs to keep up with her body that is leading.



These next 2 videos show a bit of her progress after a week (plus some change).  Her walk could still improve, but she has more control.  She's standing taller, straighter, less spastic movements.  All of this without any orthotics or suits.  It's all her.  Again, she has a way to go, but I think those foundations are being put into place.






That Feeling...

There's a certain feeling you get when you feel like your feeling the feeling of feeling the Spirit.

It's true.

It's the "I think it may be the Spirit, but I'm not sure...maybe it's me, but it could be the Spirit..."  I have found in those times, for me, it is often the (upper case) Spirit nudging my own (lower case) spirit.

The past couple days have been crazy.  We're doing a lot, we're thinking a lot, we're having to make decisions, we're relying on the Lord for guidance.  And I think I'm feeling the Spirit.  I feel peace.  I feel calm.  And even when things may not look like 1 +1 = 2, it feels that why.  

I'm grateful for peace.  I'm grateful for the promptings we receive, but I think I'm even more grateful for the comfort that the Spirit offers.  I'm not sure what it is, exactly, I feel good about....if it's the optional decision I've been weighing in my mind and heart, or if that peace means that it will just all work out like it should ~ almost as if the decision will be made for me and I'll be good with that.

When Samantha was born, I felt peace.  At the time, I believed that meant Sammy would be OK.  Medically speaking, she wasn't OK.  But I learned something very valuable from that experience that has helped me out a lot.  It's the concept of trusting the Lord.  Even when I feel like my decision is made, and I feel that peace...I'm able to feel that acceptance that it's OK if the Lord alters that for me.  I couldn't do that before.  And, I'm probably not as good as I ought to be.  But, overall, I guess that's how I feel right now.  Does any of this even make sense?  The point: I trust the Lord.  I trust Him in all my decisions.  I trust Him in my life.  I trust Him with Samantha, and Callie, and Marcus, and me.  I trusted Him before this life, I trust Him now, and I trust that He will let me in on His plan and what He was thinking after this life!  And, ultimately, that's what brings me the peace.

So, when I feel like I'm feeling that feeling of feeling the Spirit, I can trust that maybe...just maybe I am...and I can go with it...and allow the Lord's hand to move in my life.

That feels good.

Michael Ririe

Yesterday I didn't get too many pictures of Samantha.  I was busy.  She was doing well without me, and I was...busy.  (Possibly on post on that one day in the future.)  These were the two pictures I got of her.  At least they were happy, but not a whole lot to choose from to put on this here blog.



Yesterday, however, there was someone else at Now I Can taking pictures.  His name: Michael Ririe.  He's a photographer who has become...oh...invested, I suppose, in Now I Can.  I talked with him a little bit and I was impressed with his sincerity.  He's not just a photographer who has a good eye for a picture and what it can tell those who view it.  He has the heart for it as well.  He not only sees it, but he has that deep desire to share the story behind the photograph.  So, that's what he did with Now I Can.  When he came across this little 'ole therapy place, and found out what it is that they do here...how they help families and give hope to so many, he wanted to share that.  He asked founder Tracey Christensen if he could create a photo essay for Now I Can, and they immediately began working together.  The photos were displayed in 2 separate locations -- at the Covey Center for the Arts in Provo and the Orem Public Library (Orem).  There was such a community response from his work, that he is now doing an additional project, which I believe is meant to become a book (proceeds to go to Now I Can).

Yesterday.  He was here.  Taking pictures.  And he caught some of our Sammy.  I'm not sure if she was in her best form, in fact, ok, I know...she wasn't.  But he said he'll be back next week as well.  If she's in the book or not...it would be cool, but it's the fact that this project is even happening...that someone felt so strongly about this program...and that he ~ Michael Ririe ~ would take time from him family and work to create something for these kids.  For my kid.  On top of that, he's just a cool guy.

Take a few seconds and check out his Now I Can photo essay that was displayed.  I love it.  I feel like he shows the reality of intensive therapy here.  There are smiles, but there are also tears and screams.  Why?  Because these kiddos are working their tails off.  They are being pushed to do things that few believed they could ever do.  One of my favorite pictures in the series is of a little boy.  He is standing in the spider cage, arms stretched out as Sergio stretches his leg back.  He is a very unhappy little boy.  He is definitely crying.  But, even though he's upset, he keeps his arm stretched out.  He knows what he needs to do....it doesn't mean he likes it, but he knows, or at least trusts, that this is good for him.  In the series of pictures, yes, you see tears, but you also see smiles, triumph, and victory.  Check it out.

Tuesday, September 27, 2011

The Happy Herbivore by Lindsay S. Nixon


The Happy Herbivore Cookbook: Over 175 Delicious Fat-Free and Low-Fat Vegan RecipesThe Happy Herbivore Cookbook: Over 175 Delicious Fat-Free and Low-Fat Vegan Recipes by Lindsay S. Nixon
My rating: 4 of 5 stars

Who "reads" cookbooks?  I had never.  I usually look through them, but not read them like a real book.  But when The Happy Herbivore came in the mail, I read it.  I started by just reading the beginning, and then my curiousity got me going and I kept reading.  And kept reading.  And kept reading.  Until it was done.

I wanted to have a cookbook that gave me good options for healthy recipes.  So far, there are some I like, some I love, and there was one that was...not good...but Callie and Samantha still ate it with pleasure.  I like the cookbook. It is giving me easy options for healthier alternatives to what we are currently eating.  And my family is liking it too.  So, yippee for that.


View all my reviews

Who Are These Children? by Gena and Michael Calta

Who Are These Children?Who Are These Children? by Gena K. Calta
My rating: 4 of 5 stars

I read this book awhile ago when a friend mailed it to me. If you follow my blog, you'll notice that this year I haven't read a lot of fiction...at all. Is this fiction? Yes. Based on real life? Definitely. Immediately I was interested. Plus, it's about a little boy with special needs and well, I've been very interested in these books as I work on my own book.

Though this is written for, I would say, a general Christian audience, as an LDS woman, it was obvious (I think anyway) that the authors were also LDS. I appreciated the similar opinions and views we had. A large part of the plot is a dream. The dream takes place during the pre-existence. I thought it was interesting, but it felt a little too LDS fiction for me. What do I mean? I'm not sure exactly. So it's probably very unfair for me to even say that. And I wince a little, even, saying that. Maybe because I feel like it makes me a bad person or something. Partly, I think I personally have a hard time reading fictionalized accounts of true events -- historical fiction -- when it comes to the church. Is that weird?

However. I NEED to say this. Because this was what made me LOVE this book. There is a scene at the end of the book. The boy's mother has passed away. And, years later, he does as well. Upon dying, he meets his mother. She barely recognizes him because he is in a perfected state. But she sees his eyes, and his smile, and she knows it's him. All his physical ailments are gone. They embrace, and the authors couldn't have done a better job of articulating that moment...the moment I so look forward to having with Samantha one day. I was in tears. It was months ago that I read the book, and it still brings back that feeling for me. It has made me realize that this life, no matter what trial or hardship comes along, is worth it. Every single day, I think about what I read in that book -- about that mother and son, surrounded by other family members who had passed away. I felt such joy as I read that. And it has seriously made every single "difficult" moment worth it. Because, I realized...or perhaps re-realized, that life is so short. Our pain and sadness. Our discouragement and frustration. It's only a moment. And I want to one day be able to stand before the Lord and say that I had faith during those moments...and feel qualified to embrace my perfected Samantha, to talk and run with her, laugh and joyfully cry together. This book was worth every word I read just to get to that part of the book. And, I really needed to read it all to feel like I did when I got to that part. It was perfect and beautiful. I would recommend it to everyone, because whether you live with what we traditionally think of as special needs or not...we all have needs that are special and unique to us, that make life seem hard and painful. And this book, reading that moment that was so beautifully crafted, put it all into perspective for me. I always try to live optimistically, but this did something more for me.

It really changed my life.


View all my reviews

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.



Monday, September 26, 2011

Joy


Last night, while Marcus and I were playing ping pong, Bryan held Samantha as she dozed off to sleep.  Samantha is such a cuddler.  I love how she can make herself comfortable in people's arms.  She just finds that place against your body and in your arm and curls right up.  Now that she's getting bigger, it feels a little different, but she's done this exact thing since she was a baby.

Sometimes, I allow myself to go to that really horribly dark place...the place that tells me that she may one day pass away before I'm ready to let her go.  It's not a good place to go to, but it happens.  I somehow open the door and walk in...knowing I shouldn't, but I do anyway.  And I feel so sad.  I think of the last time that I may hold her like this, not knowing that the next day I won't have that chance...for the rest of my life.  I think of her absence and it breaks me.  Of the things I would miss about Samantha -- her smile, her giggle, her big blue eyes, her soft silky hair, her light -- it's just holding her like this that I believe I'd miss the most.  When I hold her, even as she falls asleep, I feel her giggle, smile, and light...her spirit.  I've experienced it nearly everyday for her life.  And nothing feels just like it.  No other baby or child holds himself like she does.  No other baby or child has a head that is perfectly doll-like as hers is...resting against me.  And that, I would sorely miss.  Her, calmly in my arms.  But then I come back through that grave door -- to a happier, lighter place.  I enter back into life where I sincerely rejoice that she is in my life and that I have her with me now.  And I giggle with her, and laugh at her funny faces.  I find humor in certain situations and my faith and love grow more than I ever thought possible.  This little girl taught me that the heart's capacity to love is immeasurable.  And knowing that I'll be with her for eternity brings me earthly happiness and a heavenly joy that I look forward to experiencing.

I love you Sammy.


Sunday Family Gathering

Yesterday we were hoping to get together with all the cousins in the area, but you can only coordinate so many schedules.  So we were able to have some quality time with Sam, Kelsie, and Jared.  It was simple but fun.  I'm hoping to do it again before we go back to California.

Bryan, Sam, Kelsie, Callie, Jared, Marcus, Samantha


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.  


Sunday, September 25, 2011

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.


happy

today, i sat in sacrament meeting with callie on my lap.  marcus was a few seats down holding sammy.  callie laid her head on my chest and i looked over and saw sammy close to marcus.  and i felt happy.

last night elder uchtdoft addressed the women of the world.  he advised us not to wait for our "golden ticket" -- thinking that when we get that one thing that we are hoping for, our life will be perfect.  the damage in waiting for that ticket is that we often overlook the blessings we already have in our lives.  i had forgotten about that part of his address until i sat in sacrament meeting, with callie against me, and watching marcus lovingly hold our other sweet little girl.

and i counted my blessings.  or, at least 3 of them.

Friday, September 23, 2011

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.

Thursday, September 22, 2011

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, September 21, 2011

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!


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