End of Week 2

On one hand, I can't believe that we're ending week 2 of therapy!  But truly, on the other and bigger hand, it feels like we've been here forever and the thought of 2 more weeks feels so....ohhhh....long.  This has been a much more strained trip for me, but we're still enjoying the time with Grandma, Grandpa, Uncle Bryan, and Aunt Lisi.  We're having fun seeing extended family and meeting new friends.  Callie's becoming a much more confident fish.  Micah's taking first steps.  And Sammy, well, Sammy's doing well.  There's always this nauseating rollercoaster ride I endure during therapy.  She does great, then I start to feel like she's not making any progress.  Then I'm encouraged again by something small.  And then I cry because I feel overwhelmed by her lack of improvement.  It's just the way it is for me.

 Sammy crawled right up and sat between Chuck and Ben.  I guess she just wanted to be a Roberts for the day.

 But she's also quite fond of Analisa and Alex.  She looks a little crazy here, but she really had been extremely excited and crawling around in circles and jumping around for about 45 minutes straight!  By this time, she was pooped.

 Sammy in the Monkey Cage.  She seemed to really like this.  Suspended, they work on her.  At times, she completely would relax and open up her back...even hang her head upside down to look at me.

 One of my highlights each day is taking Callie to swim lessons.  She loves them and is really improving.  I'm so proud of her.  She's conquering her fears and you can just see her beam confidence.  I love it.

 It's been so hot here, and this $11 investment has been soooo worth it.

Yesterday, however, I think I pushed my luck a little too far.  Swim diapers?  nahh  I didn't want to spend the money on them, and if I know Sammy's gone to the bathroom already, no problem.  But yesterday, oh sweet yesterday, Sammy bent over and I saw a bulge that screamed, "All children, evacuate the pool."  That was the end of that for the day.

 Is there ever an inappropriate time for an Otter Pop?  I think not.

 He didn't take a step here, but I assure you, it's happened 2 times.  And so far, he will stand for many, but will only take steps to Mommy.  As far as I'm concerned, that's how it should be, right?

 Friday morning, about to get ready for therapy.  These kidlets are waking up all too early considering they are going to bed later.  I hope Marcus is ready for a couple early mornings when we get back home.  I'm going to need a break!  And it'll be an hour earlier.  I'm not a fan of 5am mornings.  

 This little girl.  She brings me so much joy.  I mean, who really wants to have their legs strapped in like that?  But she smiles.  I want to be more like this little gem.

 Patiently waiting to get all strapped in....

and here we go.  Get that spider.  She doesn't love having her arms worked on, but such is life, right?

With the weekend ahead, I have a lot on my mind.  Mostly, I'm exhausted.  Seriously so tired am I.  I feel like I can't even function too well.  Yesterday, during therapy I slept a little bit, then I took a 2.5 hour nap when we got home.  I only woke up because Micah cried.  I could have stayed asleep for a very long time!

I look forward to week 3 and hope to see some more improvements.  I think they will come.  I pray they will come.  I believe they will come.  But it's 1 small step at a time.

Videos of Therapy

Happy First Day

Well, we're at Now I Can and Samantha is screaming. 

Awesome.

Yesterday was blissful.  I mean, truly.  I couldn't be-lieve how calm she was.  Stretches?  Suuuure.  Why not?  She was smiling and happy.  Yes, she complained, but she was so compliant.  Perhaps it was the lack of sleep last night?  hmmm  May have something to do with it. 

Yeah, this was yesterday.  I haven't even taken any pictures today.  I mean, why when she's just a fuss bucket?  So, perhaps she'll feel better soon when I give her a snack.  Poor girl though, she really did have a rough night.  Aaaand, as I type, she's already calming down.  Phew.

So, as of yesterday anyway, I was so impressed with Samantha's progress.  Meaning: last time we were here, she was sooo tight.  Stretching didn't seem to bother her as much.  Her biceps were much looser so they didn't have to pull as tight, and during some of these positions that she HATED last time, she was just chill...smiling, and cute as can be.  Way to go Sammy.

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.

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.

Your Vote Counts

I'm a believer in voting...local elections, presidential, not matter what the election may be for, our individual vote counts.  It's saying that "this matters to me and I'm letting people know."  Sometimes we just vote for the sheer sense of obligation, but sometimes it's attached to something we care about personally.  I always try to vote when I can.  This is on a much smaller scale....buuuut....

This year, right now, I am voting daily for Now I Can!  Yeah!!!  They have the opportunity to win up to $250,000 towards their program to help families like ours.  What does that mean?  That could mean more therapy time slots, more equipment, more scholarships to help families pay for the expense...

To help remind me to vote daily, I have put a banner up on top of our blog.  You can vote too -- and you can come to our blog everyday and click on the link if you don't want to remember where to go to vote.  It takes, seriously, 5 seconds, 10 seconds when my computer is slow (seriously, I counted).  I'm so grateful that Samantha will have the opportunity to attend Now I Can, and I'm so grateful for groups and companies who want to help charities like Now I Can.  All we need is a daily vote (and to tell your friends to vote).  I think we are currently in 2nd place.

What's 3 Weeks?

I mentioned that I want to get Samantha into Now I Can for intensive physical therapy.  We are still working out some details and beginning to save up...and I have a phone call to make on Monday about her evaluation, but I really feel good about this place.  I was checking out the schedule tonight, on their website, to see what sessions were open and which one we'd probably want to take, when I saw this new video on their home page.  Oh I was so happy for this little girl and her family.  I have NO idea what Samantha's outcome will be.  She has different issues than this little girl.  However, I can't ignore this nagging to check this place out and get her there.  Maybe it's just me, but I keep feeling like it's a spiritual prompting.  So, I'm taking it as such and we're hoping to run with it. 

I have always felt that Samantha was more than what she appears to be -- though, at this point many would say she appears to be the fighter she is.  But, in the beginning, when we didn't know too much about her and her personality, I just felt like we needed to search out what was going to help her.  I feel like my prayers have been answered so many times, directing us where we need to go, who we need to meet, and at the right times.  It's been an amazing journey. 

So, what's a 3 week session at Now I Can?  How can 3 weeks make a difference?  Well, ask me what 3 week of intensive therapy can do and then watch this.

(I can't get this video box any smaller, so just mute the video so it's not super annoying to have 2 songs playing at once.  Sorry folks.)

Cerebral Palsy: A Question of Worth

For now, I don't worry too much about Samantha's future.  I just work on a day-to-day system.  Plus, I feel like she is surrounded by people who love and adore her.  But from time to time I think about her future.  I think about how people will treat her.  I think about if people will value her when she's older and not just a "cute little 4 year old."  The video below is a reality, and it makes me worry a little.  But, I hold onto hope, and faith, and sweet love....all for my little girl.

Cerebral Palsy Awareness Month

Most know that Samantha has microcephaly, but few know or realize that she also has cerebral palsy.  Yes.  It's true.  Samantha technically has Spastic Quadriplegia Cerebral Palsy with Ataxia.  This means she has high muscle tone with jerky movements, affecting all 4 limbs, and has some balance issues.  Her physical and occupational therapy all address problems caused by her cerebral palsy -- which are pretty much caused by her microcephaly.  (Cerebral Palsy is a term used to diagnosis a variety of symptoms dealing with mobility.)

We have been so proud of Samantha as she has made great progress, but we are also getting really excited for our plans to take her to Now I Can in Utah (In the video below, there are some clips of kids in these suits.  Sammy will be doing therapy in that suit.  It's had great results in kids with CP) -- hopefully late summer/early fall -- and attend an intensive physical therapy session (4 hours a day, 5 days a week, 3 weeks).  Her physical therapists are encouraging us to go and we're really excited.  We're working on saving up the funds (yes, I sold 2 items on eBay today thank you very much) and we're just going to make it work.  We'll be sure to keep you updated.

But for now, remember it is Cerebral Palsy Awareness Month.  Looking at Samantha, I have never seen weakness.  Not once.  All those kids with CP -- and kids who are not grown up into adults -- may have troubles moving or talking.  They may seem weak, but they are strong.