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.

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.

Sitting Up

Someone's been sitting up on their own for a couple weeks now...and it needs to be officially documented.  At the time I took this picture, he was starting to lose balance a bit, and since he was on a bed, I put Callie's pillow pet there in case he fell over.  Once I re-positioned him, he was set.  This was a few weeks ago, so now...yes, he's quite the expert sitter.

Growing Up

Ok.  I admit, it's hard to tell in this picture.  Well, do you see some swollen gums and a crocked tooth?  Sammy doesn't really have crooked teeth, but now she does.  Yes, Sammy has her first loose tooth!  I'm excited because that's a big girl thing.  But something about it makes me want to cry too.  She's growing up.  Her first loose tooth!  And, she'll probably just swallow it during the middle of the night or something.  I want that tooth...I mean, the Tooth Fairy wants it.  Anyway.  Here's to our big girl.

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.

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.

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.

Thankful 8: Progress

Today I wrote about change...how I'm grateful for change.

Tonight, before putting Samantha to bed, I was relishing in being her mom. I loved every moment of getting her ready for bed. I am currently, sort of, working on her using the toilet. Tonight, she did. She peed in our potty. She's no where near "potty trained," but we are taking small, very very small, steps.

As I cheered for her and she giggled (and then tooted), I realized what I'm grateful for, in conjunction with CHANGE is PROGRESS. Often change can be an indication of progress, and it certainly has been for us on many occasions.

I'm grateful for progress -- no matter how small.

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.

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.

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!

Life Continues...

I will be among the many -- or thousands -- who blog about the Prince and Duchess today.  The Royal Wedding.  How fabulous.  I decided not to wake up early since I went to bed so late.  But, I'm relying on Scotty and Annie to have recorded it for me.  I did, however, catch Good Morning America this morning when I woke up with Samantha, and I have to say, I thought Kate, now Catherine, looked  beautiful.  I'm all for the natural look.  Loved her hair and that gorgeous veil (I'm a veil girl)...the lace sleeves.  As if my opinion matters...I say "nicely done."  If I never get to watch the recorded wedding, then I'll watch it on their 10 year anniversay when it's rebroadcasted...like I did as a little girl watching Princess Diana marry Prince Charles.  Marcus thinks William and Kate will divorce.  I sure hope not.  I want them to be the Nicole Kidman/Tom Cruise...wait...how about the Jennifer Aniston/Brad Pitt....uh....are they really doomed?  I sure hope not.  The romantic in me still believes they'll hang on like Lucille and Desi...ahhhh.  Enough.  No more.  I see a future similar to that of Danny DeVito and Rhea Perlman!  That's right.  Tom Hanks and Rita Wilson.  Will and Jada Smith...now that's what I'm talking about.  Kevin and Kyra.  Ok ok ok

I'm at the hospital today with Nathaniel.  He's doing better, though he's still heavily sedated.  It reminds me of moments in the hospital with Samantha, but this is something that Marcus and I never had to experience -- weeks in the hospital.  I feel for Scotty and Annie.

Plans for Sweatin' for Sammy are moving forward.  I can't believe it's so soon.  A woman from the newspaper came and did an interview.  She's writing an article about Samantha.  A photographer is coming on Saturday to take pictures of her.  Wow.  This seems so unreal.

I'm continuing to do what I can to prepare for Girls' Camp.  I'm excited to be one of the assistant directors, but it is one more thing to think about right now.  I'm confident in the young women I'm working with, though, so it'll all come together fine.

I take back Nathaniel being heavily sedated.  He's heavily medicated, but I just spent 15 minutes holding his hand and stroking his hair.  Everytime I stopped, he squirmed.

Callie went had a rough week last week, but the past few days she's been so sweet.  She has been actively playing and trying to engage with Samantha more.  I guess she always has, but it's just different.  It's almost as if she's matured.  Why does saying that make me tear up?  But she has.  She more clearly understands Samantha.  She jokes with her and Sammy smiles back.  Callie knows how to play differently with Samantha.  She doesn't want Samantha to go to school in the mornings because she wants her around.  It's so great to see their relationship deepen.  I love Callie.  She makes me smile every morning when she wakes up, comes in the room and says, "Good Mooooorning." 

Life continues to move on.  I feel like I've been going at a frantic pace for so long.  I'm not keeping up with everything I had hoped to.  My book is on hold the past little bit as I try to be there for my own family and extended family.  But, I'm ok with that. 

Ok...time to help out again...

Chevy's Success

For those who have not heard, our Chevy's fundrasier for Samantha this past Thursday was an incredible success.  I was so overwhelmed at the outpouring of love and support for our little girl.  Many who could not attend sent checks or cash as a way to show their support.  Some ate at Chevy's for lunch and dinner!  You guys are incredible.  We have amazing friends.  But, also, for those who didn't even know us but came anyway...wow.  And thank you!

I had told Chevy's that I thought there would be a lot of people.  I'm not sure they believed me.  They were understaffed for lunch, so our friends politely waited.  Take-outs were abundant!  And dinner.  Woa, let's just talk about dinner.  I couldn't believe how many people were there.  Thank you thank you thank you!!!  We didn't eat dinner that night, just showed up and talked with people.  As I said earlier, it was an overwhelming experience to be surrounded by those we know and love, and to meet new people who wanted to know more about Samantha and this cause they were helping.  Fantastic and humbling.

This was a difficult fundraiser for me.  Back in high school, I led a lot of fundraisers, but never one for my own family.  I wasn't sure what to expect.  During a time when I've felt frustrated and discouraged about different things, I have felt the love of the Lord through the hundreds of people who have been rallying around Samantha and our family.  It's a feeling I've only felt once before this stronly -- the morning we sat in the "family waiting room" while Samantha had her head surgery.  At that time, when I was struck with panic and fear, I felt myself be lifted up in a way that felt as if I was physically being lifted in my seat.  I attribute that experience almost 5 years ago to the prayers of our friends and family -- many of who were at Chevy's last Thursday.

There is no way I can thank everyone personally who attended or ordered food that day.  So, in a small attempt to express our thanks, I had thank you notes on all the tables with a family picture.  At the front desk, there was another thank you note...unfortunately at dinner the manager didn't pass them out like they did at lunch (at lunch, the waiters put slid the notes in with the checks).  I don't have a copy of those notes anymore...I wish I did so I could put it in Samantha's scrapbook -- but for those who attended, thank you from the bottom of our hearts. 

And, for those who are curious.  That day, we brought in almost $4,000 worth of business to Chevy's.  That means, Samantha will receive a check of $989.33 towards her therapy!  Chevy's was very happy -- they even want to do it again for us in June.  I think we'll pass, but it was flattering nonetheless.

 

Other People's Potties

Callie's been home potty-trained, I call it, for awhile now.  What does that mean?  She'll use the potty only at home.  She had a terribly traumatic experience (though we're not sure what it was) that made her very much afraid of other people's potties.  I didn't push it.  I didn't want to force her.  For the most part, she's been really good at "holding it" until we got home.  I did always have to make sure she tried to go before leaving anywhere, but even when I was a wee lass and using other people's potties, my mom made me "try" before we went anywhere.  When we'd be out, I'd ask her if she needed to go.  I always told her that I'd hold her -- because she was afraid she'd fall in (and rightfully so, my goodness!).  But, she never wanted to use the potty in public or in someone else's home.

In the past few weeks, Callie's made some HUGE break throughs.  She has used other people's potties on several occassions, and even today, she went while we were at the park -- a PUBLIC, kind of scary, potty!  Way to go Callie girl.  And everytime she goes she says, "Mommy, you hold me?"  "Of course Callie."  "Because you love me."  "That's right Callie.  Because I love you."  She says it very matter-of-factly...and I love it.  Today, as we entered the scary park bathroom, she asked with trepidation, "
Mommy?  You hold me?" 
"Yes Callie." 
"You won't let me fall in?" 
"Have I ever let you fall in Sweetie?" 
"No." 
"I will never let you fall in Callie.  I'll hold you." 
"Because you love me." 

Ahhhhhhh.  Sweet girl.  And pee she went in the potty. 

In addition to her ability to now use the bathrooms in different locations outside of her secure, familiar potty at home, she has been napping without a diaper.  We haven't had one accident.  I had noticed that her diaper was dry for awhile now after naps, so we just didn't put it on one day...we haven't gone back. 

Oh, she's growing up...and what's worse...she's called me "Mom" many many times now in the past 2 days!  My baby girl is growing up.

Conversations with Samantha

These are actual conversations that took place today after church.  I repeat...these are actual conversations that took place today after church.

Conversation #1
While Samantha sits in her high chair, her mother feeds her an extra buttery grilled cheese sandwich.  The mood is lighthearted and happy. 
Mommy:  Sammy, do you want more?  Mmmmmmmmore?
Samantha:  mmmmm
Mommy:  Mmmmmoooore?
Samantha:  Mmmmmmmooooore.
Upon hearing Samantha's request for more, Mommy gives Samantha more to eat.  This conversation repeats 3 times.  Enter Daddy.
Mommy:  You've got to hear this Marcus.  Ok.  Sammy, mmmmmmmmore?
Samantha begins to kick her legs with excitement.  And though she hesitates to cooperate, decides she will after all and asks for "more" to eat.  All rejoice by clapping and cheering.

Conversation #2
Mommy, trying to multitask, begins to do some therapy during lunch.  She takes a flashlight and flashes the light in Samantha's eyes.  Samantha moves her head away and squirms in her highchair.
Mommy:  Samantha, if you want me to stop, you'll have to say "no."
Samantha:  NO!
Mommy:  Very well then.
Mommy immediately puts the flashlight away and continues to feed Samantha lunch. 

Conversation #3
 Mommy continues to give Samantha parts of the extra buttery grilled cheese sandwich.  Samantha begins to not accept the food anymore and Mommy senses thirst.  She picks up Samantha's cup and offers it to the child.
Mommy:  Sammy, do you want water?  clearly annunciating Wa.  Wa.  Wa-ter. 
Samantha:  reaching for the cup Wa.  Wad.  begins savagely drinking from the cup
Mommy:  Very good Sammy.  Water.  Water.  The sky opens to the heavens and angels descend, singing songs of praise...or at least it feels that way.

We are so excited about Sammy's progress lately.  We all, therapists included, have noticed how much Sammy's been "talking."  The other day, it occured to me that if I didn't start working on this with her, responding to what she was saying and using the opportunities to guide her speech, she'd lose it; she'd begin to connect that what she's saying isn't getting the response she needs/wants.  So, I've been working really hard to help her realize that what she says is meaningful and can help her get what she wants.  And, today, well, it was a pretty awesome day.  Our computer is down, so I haven't been able to upload pictures in a while and it may be some time before I can, so until then, yeah for progress!

She is Amazing

It's easy to sometimes think Samantha is doing something new, progressing on some level, but then talk ourselves out of the idea. I'm not sure why we do that. Perhaps it's because we have decided to more fully believe others who are filled with doubts regarding Sammy's future than our own paternal instincts and, frankly, knowledge. I see her doing great and amazing things that sometimes she doesn't repeat for months down the road. But still, I know what I see, or hear. I know what I know. But still, I sometimes think to myself, "Oh, that was just an accident. She didn't mean to do that." Why? Why do I do that? Shouldn't I always assume that she did, in fact, mean to do that? As her mother and as her advocate, I should be the one, even if I'm the only one, who is cheering her on and giving her credit for every single little thing she accomplishes. I am always cheering her on, but it's only most of the time that I, myself, truly believe what I see. That makes me sad. And everyday I try to have more faith in her abilities. It's really not as bad as it sounds, I don't think. I believe Samantha is quite capable of a lot more than what she is currently doing, and I believe that we will continue to see miracles with this girl. Just sometimes, I guess I have felt like I have to assume the worst...assume that she isn't doing things with purpose. I feel a lot of pressure to not assume my child is greater than she is. Isn't that just wrong?! I mean, really. Mothers should never feel pressure to think their child is anything than what they are. And quite frankly, I believe that each child is more amazing than we realize. So, mothers, and fathers, think your kids are amazing -- because they are.

With that said -- wow, guess I had to get something off my chest, eh? -- Samantha has had a great week. It's been really fun. First of all, drinking the Capri Sun (which is funny because I actually just typed Crapi Sun...oops) was a really cool thing to witness for 2 reasons. #1 -- Samantha is definitely starting to show her likes and dislikes more. I like seeing that, and it's a huge developmental accomplishment when one can clearly demonstrate what he/she likes or dislikes. So, yippee for you Sammy. And even better is #2 -- I didn't know Samantha could drink out of a straw. For a long time we worked on it. She got it, kind of. And, I gave up. I thought, she can drink out of her Avent cup, that's good enough for now. About 1 year later, with no exposure to straws, she, on her own, understood to suck out of the straw to get to that really yummy sugary juice! Now, that was exciting for me.

Also this week, we've had some improvements with her language. We haven't had speech therapy since we left Spokane, and this has been really bothersome to me. Samantha gets it in school, but I don't think it's nearly enough. Back in Spokane we not only had the best SLP -- oh Carly how we love you -- but Sammy was meeting with her twice a week. Now, nothing. It's frustrating to me, so we continue to do what we can at home. I've been working on "more" a lot with her. It was a few weeks ago now when I was giving her pretzels in the car and she said "mo." That was exciting stuff. But since then, we've been able to get some "mo" out of her from time to time. And even better, there is a strong distinction between her "mo" and "no." It definitely takes the right motivation. And once again, Capri Sun has pulled through. Sammy was drinking the Capri Sun, took a break and starting jumping in excitement -- or sugar rush, not sure which. We laughed and I asked "Sammy, do you want more?" She stopped jumping and said, "Mooo." So, mo' she got. Peggy was walking down the hall and I called her in so she could witness it. "Sammy, do you want mo?" Samantha stopped, and clearly said "no." As she did so, she took her hand it swept it to the side, like she does when she no longer wants food at any given meal. But still, we asked again, and she said "nnnoooo." It was so clear. So purposeful.

Our little Samantha clearly knows what she wants, and she is finally starting to be able to let us know. In this moment, I couldn't be happier!

Wahoo!

It's official. Sammy says "MO" -- translation: more.

Yep. My girl is so smart I'm about doing flips here. I've been thinking for a little bit that she was saying it...but today there was no way to deny it.

Driving home from school. Handing pretzels to her in the back seat.

"Sammy? Do you want more? Mmmmmore?" silence as I wait for a response.

"Mmmmooooo."

"Yeah!!!! Sammy, mmmmore mmmmore mmmmore pretzels!"

She giggled and giggled and ate her pretzels while I laughed my little heart out...and she laughed more. Life is joyous isn't it?