Now I Can update

We're here at Now I Can and Sammy's been a really trooper. I'm so impressed with her. She is in the worst physical shape she's been in ... ever... and she's pushing through and working so hard. Our goal for this session of intensive therapy out here in good 'ole Utah is to avoid surgery. I'm not sure if that will happen. But I have faith and believe in miracles. Will she need surgery? Maybe one day. But we are taking this one day at a time and seeing if we can stretch out her muscles instead of having to cut them. It makes me sad to think about.

Coming from California, we didn't have "warm" clothes for November in Utah. I had to go out to Walmart and buy some clothes because we were all freezing. Sweats are working well for her.

Really working on getting that foot down.

Sammy is an angel. But something I learned last night is that angels apparently require no sleep. At all! She woke up at 1am and fell back asleep at 5am. This wasn't fun. Luckily my saintly parents are here and when my dad woke up proclaiming how he slept so well and then asked about me, he immediately told me to go back to bed and he'd take care of it all. Phew. I anticipated Sammy being a wreck today, but she's been doing so well. Hopefully she sleeps through the night and is ready for a weekend to recover before hitting it hard again on Monday.

Smiling but looking sleepy

No Woes on Wednesday!!!

(Pictures aren't uploading.  Give it time.  They will come.)


Can I just say....

I'm so happy.

I was so dreading this trip, for a lot of reasons.  But as soon as I walked through the door of Now I Can Monday morning, I felt this flood of peace.  That only got stronger, and turned to excitement, when Mark started to work with Samantha and begin her initial evaluation.  I don't know Mark.  I knew there was a new physical therapist, and I was just nervous.  But Mark worked with Sammy comfortably and with ease, and she warmed up to him immediately.  I was so happy.

Tuesday and Wednesday I missed out on therapy.  I dropped her off and wasn't able to return until it was time to pick her up.  Tuesday I headed to the airport to pick up my parents, Wednesday I was sick.  (Feeling better after some good solid sleep)

Wednesday.  What a great day.  She fussed.  She cried.  At time, the crazy girl screamed out in frustration.  But already, on day 3, I'm seeing changes.

* When lying on her side, she normally curls up in fetal position.  She's already starting to elongate her body and rest on her elbow.

* Feet.  Big problem and one of our biggest concerns.  She is beginning to stand flat foot.  Walk flat foot?  Not yet.  But stand?  Beginning to.

* Tuesday, when Nichole worked with her, she couldn't get any response to some muscle activation.  Today, response.  So, her feet.  Dorsal flexion.  She's always on tippy toes and pointed with a prima ballerina.  Nichole tried to stimulate a response, her toes didn't even budge.  Nichole said it was like Sammy's brain had no idea what to do...that they could even move her toes.  Day 3, she's starting to wiggle them.

* Tuesday: Sammy needs a forceful amount of cueing to open up her rib cage...and even still, she wouldn't do it.  Wednesday: With a moderate cue, Sammy is starting to pull her shoulders back and open her rib cage.

* I'm noticing just after a few days of this session, when she's having her snack in the stander, she isn't as hunched over.  She is standing up straighter and her shoulders are more relaxed.

I talked to Nichole for awhile about Sammy, what it is we want to work on, what my concerns are, what's going on with Sammy's body.  This is what I learned:

* It's not Sammy's Achilles tendon or even her calves.  It's her dang hamstrings that are so tight.  Her her glutes.  Those 2 muscles are dominating her body -- or at least lower body.  They are always tight.  When she's laying on her back, her knees pop up and her toes are pointed...it's because of those hammy's and glutes.  We're working on that.

The thing that really made me (thrilled, ecstatic, over the moon) happy was when Nichole said that because she's already doing so well, it shows that those neural pathways are still there.  The seizures haven't "destroyed" the pathways.  Maybe those pathways became dormant, but she's pretty quickly relearning those things she once could do.  Yeah!

I can tell Samantha's much more comfortable with the movements.  Sore?  Yep.  We can tell her muscles are sore.  But she'll get a nice warm bath today before she goes to bed and she'll sleep well before we hit it again tomorrow.  I'm so proud of her and I just keep getting confirmation after another that we are where we need to be.

Kneeling, Standing, and Such

I haven't been able to take too many pictures or videos this time around.  Believe me, there were a ton more from our other sessions...if you can imagine that.  But, on this day (Thursday), I felt like there were some good moments I was able to capture.  I had to do it through the tinted glass, and of course right when I would stop recording is when something more impressive happened.  Such is life, right?  So.  Here we go.

Tall Kneel.  Sammy was up on her own staying in this position for quite a while.  I only got a small part of it.

Half Kneel.



Standing.  This is coming along.  She's holding a straighter position longer and better.  This may not be the best illustration of it, but this is what I got.

Laughing/Screaming in triumph!

Development and Growth

We all need change.  Without it, well, we'd be the same.  And that's not good.  We are meant to grow, develop, become something greater than we already are.

Developments
* Sammy is standing straighter

* She is beginning to shift weight from leg to leg without falling over
* She stops herself when approaching objects more consistently

* She broke a poster-sized picture frame at therapy (ooops)
* She is talking a lot during therapy.  "I'm coming" and things of the sort
* She is doing better at keeping her feet flat...instead of rotating out and standing on the outside of her foot

Notice her feet...this was the 2nd day we were here I believe.  She is putting her weight on the outside of her feet.  This is improving quite a bit.

* She continues to protest like a champ when she doesn't want to do something
* She doesn't trip over the exercise mat at all anymore...consistently steps up over it

Growth
* Samantha's head stopped growing when she was 4 months old.  She had surgery to correct her skull and during that time, the doctor said he allowed space for her brain to grow.  If it did not grow, the skull would collapse back to where it was.  Her brain did not grow.  The skull collapsed and there was a large ridge that ran across the top of her head.  We began doing craniosacral therapy and over a period of time, the ridge was smaller.  This ridge was always covered by her honey-colored hair, so it was only obvious to me as I braided her hair or whatnot.  At every doctor appointment, her head as measured at 33 cm.  That's tiny, folks.  At the last doctor appointment we had before coming to Utah, only days before we came, she measured at 34 cm.  We were shocked, so I had him do it again.  Samantha sat so calmly while he measured her head, that he did it a few times.  34 cm.  Samantha was given a priesthood blessings many years ago and was told that her brain would grow.  I've put a lot of faith in that.  It doesn't matter if it grows or not, really...but I believe those words. There could be a lot of explanations about that 1 cm growth, but I believe it's the beginning of more growth.  She will always be small.  I'm ok with that.  This is more about my faith and seeing the fruits of it.

 * Speaking of growth...we are expecting a baby boy in September.

Vocal

Someone was h-a-p-p-y in therapy on Friday and very vocal.  It was a good day.  Maybe she knew that she was going to be seeing her daddy soon.  Marcus flew out for the weekend to spend time with his little family and it was so fun to see him.  Sammy, Callie, and I were all happy to have some daddy-time.  She must know that time is quickly coming to an end, because she is NOT h-a-p-p-y right now in therapy.  So sad.

It's Friday and Someone is Tired

Noted progress:

* As Sammy walks, she doesn't wander as much
* Walking in a straighter direction
* Instead of using momentum to change direction, she stops, and then continues in new direction -- these 1st three items all show a substantial improvement in her spatial awareness
* Able to hold static standing position longer and in a more natural stance
* No chewing on her fingers when she's tired or agitated!  Wahoo.  Seriously, this is a big deal to me.

Wednesday Already

I have this weird thing when it comes to therapy here at Now I Can.  Maybe it's because it's not cheap.  But each day is so important to me.

We have been here THREE days.  Only 3 days.  And last night, Tuesday night...our 2nd day, I said to my friend, "Tomorrow's Wednesday, which means there's only Thursday and Friday left.  The first week is almost over!"  Ok.  We had only been there 2 days.  TWO days.  But, now, it's already Wednesday of the first week.  We start the weeks: Monday, and I think everything is fine.  But as soon as Tuesday hits, I start to think the week is passing by too quickly.  I'm weird.  I know.  But, come on...it's Wednesday Already!

Sammy's doing well today.  We both slept much better diffusing Breathe (a mix of a bunch of different essential oils that help you...breathe) as we slept.  Honestly, I haven't slept that well for about a week, at least.  Sammy slept great too.  The night before, she has been waking up because she'd get stuffed up.  So, it was nice to have clear nasal passages.  It's conducive to sleeping, that whole breathing thing.  And it's nice, quite frankly.  I woke Callie up and brought her to Provo with us.  She's spending the day with Bryan...who deserves a blog post all to himself ~ a tribute to Bryan if you will.  He offered to play with her while I'm here with Sammy.  Callie's been playing with Caitlin...the little girl who lives where we are staying...and it's been going well.  It is nice, though, for them to take a break and for Callie to spend time with Bryan.  When I woke her up, before she even opened her eyes, she asked me, "Are we going to see Bryan?"  She was pretty excited.

So far, Sammy's happy.  She's cried a few times, but she's doing super well.  She's happy.  I'm happy.  The universe is happy.  Her schedule each day looks something like this:

8:00 am -- Stretching and Myofacial Release

I love this picture.  I mean, who doesn't love Cat in the Hat while someone is stretching you? 

9:00 am -- Neurosuit
10:00 am -- Spider Cage

She's laughing here.  Seriously.

10:30 am -- Stander/Snack (Mommy Time)

blurry, but dang cute

My golly.
She's so cute...a little crazy...but cute.

11:00 am -- Functional Activities (working on daily, functional stuff)
11:30 am -- Gait Re-Education  (that's right, relearning how to specifically walk)


Wahoo Sammers.  You're a champ!

It Can Only Get Better

Remember this happy face from yesterday?

That is NOT her face today.

While I sit/lay down in the "family room" -- completely stuffed up from this horribly wicked cold that is sucking precious sleep from my life -- my new best friend is Mr. Diffuser who is spouting into the air OnGuard (helping me not only breath a little better, actually, but also disinfecting the air that I contaminate)...

In the background I hear screams from this face

But don't fret.  We've had some smiles and joy as well....uh, "joy" may be a stretch.  I can attest to the fact that this girl has herself one strong set of lungs.  And I suppose, when someone is that upset, it can only get better, right?

Therapy Therapy Therapy....

Callie, Sammy, and I took the trek and are once again living out of someone else's home for a month so Sammy can attend Now I Can.  I know it's good and I see results when we're here, but to be honest, I have not been looking forward to this trip.  I'm tired.  I'm a bit worn out.  And I miss Marcus when we're apart so long.  But, I know it's good for her, and now that we're here, I'm in therapy mode and things are moving right along.

Today was Sammy's first day...evaluation day.  I was encouraged to see that she was doing things that she couldn't do before.  Already, she is laying down flat on her tummy without being forced...which means she is relaxing her muscles enough to spread out like that...she's able to sit on her own with her legs out...which means her balance has improved...and she didn't cry today while they were doing some minor stuff with her. This is all an encouraging start.

Though Sammy and I were slammed with colds and Callie (who has fallen asleep in time out) is already spent and extremely tired...I think it'll be a good 4 weeks.

I pulled her out of bed this morning to drive down to Provo for the therapy.  This is her happy morning face.  I love it.

When she first went down, her arms were stretched out like Super Man.  Awesome.  I have never seen her just lay down like this outside of the bath tub.  By the time I ran to get my camera, she was getting up on her elbows, but she stayed like this for a bit.

Sitting up.  Not perfect, but according to their notes last time, when she came she couldn't sit up at all without falling back.

Sammy on the move.

Getting her suit fitted so it'll be ready for her first thing tomorrow morning.  

Look at all those cords!

When Mitch got the suit on her, she just stayed on the ground for awhile.  We couldn't get her to get up and move....it was as if she was reorienting her body, trying to remember and figure it all out.  But then she got up and started moving. I have a good feeling about this sesssion.

As a side note, there is a new director at Now I Can.  Michael Ririe is the photographer who took pictures of Sammy and others at Now I Can to try to educate the community about the therapy.  He also created a photographic book, which is beautiful, filled with pictures of these kids and some written words from family members.  He is the new director and it was fun to see him again in this new role.  When I saw him, he gave me an enlarged black and white photograph of Sammy that he had taken and that was used in his exhibit ... it was also the photo that the news used as one of their close-ups and background picture to talk about the story.  Mike said he had many people talk to them about this photo of Sammy...he said it was one of his favorites....and that just made my heart melt.  Sammy is such a sweetheart, and I love having this photograph of her.  I need to find a pretty black frame for it to put up...and then get a great black and white of Callie to have next to it.

There have been other changes at Now I Can.  They have expanded and have 1 more therapy room as well as another therapist.  I'm not sure, yet, how this will affect Sammy.  We are in the new room...which at first I didn't like.  I felt so removed because it's kind of in the back.  But, as we were there working on things, I thought that this smaller room is actually kind of perfect.  It's quieter, and I won't get distracted by what's going on around the place.

My lack of excitement is quickly being replaced by motivation and an eagerness to work and see what Sammy has in her this time around.

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.

A Thank You Letter

I was asked to write a letter to the donors at Now I Can, explaining our experience.  I thought I'd write it here as well.  I was also asked to post it on Kidz.


To Whom it May Concern:


When we stumbled across Now I Can, it felt right.  I frequently follow my feelings -- but this feeling required more money than I usually spend, so I did my research.  And our decision was made.  We weren't sure how, but we were getting our Samantha to Utah.


After we decided, we scheduled her session, and miracles began to happen.  The finances appeared little by little.  A place to stay opened up for us (we are from California).  And everything just fell into place.


Upon arriving and beginning therapy at Now I Can, those tiny miracles continued.  Samantha is 5 years old with extremely tight muscles (high muscle tone).  In just 3 weeks, I've seen more improvement in her body and body control than I've seen in over a year!  She stands with increased stability now, flat on her feet a majority of the time.  She stands straight up instead of with her back hunched over.  And she extends her arms out further than she once could.  


Since being here, I've seen many physical changes in her, but I also see a proverbial door opening up for her as she gains control and learns to master her body.  What an incredible gift of increased quality of life.  With each stretch and movement here, her future opportunities are increasing.  She gains better knowledge of the world around her as she gains the proper mobility that enables her to explore it.  Again, what a gift.


Please take it most sincerely when I say Thank You.  Thank you for supporting Now I Can -- a seemingly small facility that brings about incredible change.


Sincerely,
Jeanette G.

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.

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.

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.

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 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.