When In Utah

Things I do in Utah that I don't do at home in California

Run in the rain 

(except I hear there was quite a bit back home yesterday! Yay!)

Run in rain that turns into snowflakes as my elevation increases

Flush the toilet every single time I use it 

(sounds gross, but I'm hard core in protecting the little water we have left in CA)

Shower for a REALLY REALLY long time

Give the kids a warm bath every single day 

(this drought has really messed up my life!)

Take a morning nap when my dad wakes up and says, 

"I'll watch the kids, why don't you go back to bed"

FREEZE daily. It's so cold here. I've become so wimpy

Snuggle with Sammy more often. I've had so much time to just be with her. I love it

Miss Callie and Marcus. I really miss them

Hang out with Bryan and Analisa regularly. That has been really fun for me

Get some of the best therapy for Sammy at Now I Can

I'm listening to happy squeals from Sammy. She's on her break and ready for a snack. I feel so blessed that we are here.

Getting her morning stretch on

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

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.

Relearning to Walk

Samantha's made some great progress.  And I'm so happy about that.  But it seems like the progress all happened right away, and now comes the struggle.

Her feet are down more during therapy.  This is fantastic news.  We had thought that she lost all range in her feet/ankle, but that is clearly not the case.  She stands flat and for quite some time, as she works.  What I am noticing, though, is she doesn't stand flat footed at home at all.  hm  I'd really like to see that.

The other really noticeable thing is that she struggles walking ~ more so than she did before.  I was talking to Mark and he mentioned that I may see this...and it's true, I have.  She has gotten her feet down, but she has no idea what to do now that her feet are flat.  She is in such a pattern of walking high and then higher up on her toes, she doesn't know how to properly walk.  So, they are spending a lot of time helping her feel her feet...feel the ground under her feet...and then use the correct muscles to actually walk.

Today is one of those days I wish it were all easy.

As a side note: I'm super tired!  I can't seem to sleep enough.  So, I'm going to take a little nap while she's in the spider cage and hopefully that will revive me a little bit.

Happy Hoop

Someone is REALLY happy today working in the spider cage with this hoop they rigged up for her.  Work?  Who says intensive therapy is any work?  From the sounds coming from Sammy today, you'd think she was on a very expensive, exclusive vacation!  Squeals of delight.  Giggles.  Babbles.  Thank you Happy Hoop.  I'll be looking forward to working with you again soon.

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.

Now I Can video

Now I Can sent me this video of Sammy at her last session and I keep forgetting to post it.  Go to the LINK to see her in all her therapeutic glory!

Last Day

Time has gone by pretty fast.  For the past few days, I've been very ready to come home...but today, I want to stay.  Sammy is doing really well and I just want to stay.

I'm happy to report how happy all the therapists are.  Sammy is walking straighter, but more importantly, she is walking more slowly.  She's always had 1 speed, and that's FAST.  But, now that she is moving slower, she has more control.  She is stopping before getting to objects.  Today, she slowly walked down the hall on her own (no, I have no video...I was in the middle of an interview), turned the corner, stopped herself to look at some pictures which she touched but didn't fling or throw, turned around, and walked back into the gym.  It sounds just like your everyday kid, right?  I'm quite happy.

We are planning on coming back in 1 year.  It makes me anxious and want to get back here in 6 months instead of waiting the entire year.

It's a good day to end on.

Thank you to Sergio, Nacole, Mitch, and Andrea for all their work with Sammy.

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.

Videos of Therapy

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.

Oh My Goodness

It's been awhile since I wrote anything.  And, I also realized it had been awhile since I downloaded some pictures.  And tonight, when I finally did, I came across these pictures.  Oh. My. Goodness!!!  This is from the last day of therapy in Utah.  She was doing so well and was in such a great mood.  I can't help but think that she is happier when she is in more control.  It makes sense anyway.

I have one dang cute girl.  

That's all.