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.

Consumed with Nate

During this first week, I have spent a lot of time in the "family room" at therapy.  I've had this horrendous cold that is taking it's toll on me and I'm very paranoid of getting anyone else sick.  There are so many kids who are immune deficient who come to therapy here, and I do NOT want to get anyone sick.  So, I've kind of quarantined myself until next week.  My recovery is coming, but I'm giving it a full week before I roam out too much.  I've done some research for my book, I've blogged a little and caught up on friends' lives via blogs, and have done some much needed napping.

Today, though, while I'm here doing therapy with Sammy, I'm thinking about Nate.  My little nephew Naters.  (Yes...I add "-er" affectionately to those I who are adorable ... Sammers, Naters, and maybe one day if proven cute enough, even YOU will get an "-er" on the end of your name)  Anyway...Nate's consuming my thoughts.

Two turntables and a microphone....

So I'm here...on the couch in the family room, deciding to relax and put my feet up, listening to my music (today I'm feeling kind of chill with Mason Jennings, Griffin House, and Elliot Smith), breathing, drinking, coughing, and I think about Nate.  Because, the only thing Nate can do among those things I mentioned that I am currently doing is listen to music.  He can't say, "Oh, I think I'll kick back and put my feet up."  No.  Someone has to help position him to do that.  He can't breath on his own.  And, he certainly cannot cough if he gets a cold.  That's why it's so dangerous for him to get sick.

I have spent the past 2 hours reading about SMARD, reading about a boy, Gus, who is hiking to raise money for SMARD research  and working on my contacts to see how we can raise money for Nate.  There's a football fundraiser coming up here in November, and there are works for another bigger fundraiser in October.  I hope so much for Nate and his family.

What I want for Samantha is for people to see her and feel her spirit.  It's ok if they notice her microcephalic head and her palsied movements.  I'm ok with that because that is what makes her so awesome, that despite those thing...or maybe because of those impairments...she is able to shine brighter than the average kid.  I have often said that her spirit is so much bigger than her body that it just oozes from her.  It's true.  She's such a source of light.

Well, I feel that same way about Nathaniel.  I notice his trach.  I notice that he can't function like most kids and that he is connected to a machine.  But despite that...or maybe because of it?...he shines brighter.  His whispy voice makes me melt when he says, "Jenny" with a smile...when he reaches out and wants to sit with me.  When he wants to be by Callie and Sammy, it brings me so much joy.  He loves Callie.  And he seems to understand Sammy's spirit.  I really wonder if they knew each other before they were even born.  I've joked and said before that Samantha and Nathaniel are competitive...that in the premortal existence there was a conversation that went something like this:

S: I'm going to be born with a small head.
N: Oh yeah? Well, I'm not going to be able to breathe on my own.
S: Oh yeeeah?!  Well, I'm going to have seizures that shut my body down and are so crazy.  I'm really going to freak people out.
N: That's nothing. Come on Sammy. You gotta do better than that.  Breathing.  Remember.  Vital to life.  I can't do it.  And I'll almost die.  Think of how that will freak people out.
S: Well. (In deep thought) I can't talk.  You can.
N: Yeah. Well, I can't walk. You can.

And the conversation continues.  It's happy, friendly bantering of course.  I don't mean to be disrespectful...honestly, but these two have given our families a run for their money and one has got to wonder how close they really are.  Now, honestly speaking, I think their conversation went more like this:

S: Are you ready for this?
N: Yep.
S: Are you sure?
N: No. But, when you think about it, it won't be that long down there before everything will be normal again. Are you ready?
S: Yeah.  (Quiet. In deep thought.) I love you Nate.
N: I love you too Sammy.  Do your magic and get my dad and mom ready.  Seriously.  It's going to be hard for them.
S: I know. I'll see you soon...remember this, ok?
(enter Callie)
C: You guys are so dramatic. Come on. I got both your backs.

Then I'm sure there was some kind of fist bump that sealed their promise that they'd all be there for each other...that they'd cheer each other on...blah blah blah.  Is that conversation cheesy?  Yeah, disgustingly.  But tears are streaming down my face as I think about it because these kids are more than special.  They are angelic and I feel so blessed to have Samantha, Callie, and now Nate in my life.

~*~*~*~*~*~*~*~*~*~

If you are interested in finding out more about SMARD and how you can help Nate and kids like him, go to my SMARD and You tab above.

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.

The Entitlement Trap by Richard and Jane Eyre

Entitlement.  One of the most irritating things is when you talk to someone who thinks they deserve something, or a ton or things, just because.  As if they are breathing is reason enough to have whatever it is they want.  And I'm not just talking about material things.  I'm talking about people expecting other people's time and resources simply because.  And, if we were all 100% Christ-like, perhaps that would be enough.  But, I am from the school of thought that we should be trying to become as self-reliant as possible, and then, when we need a helping hand, we can confidently ask for it...or receive it when given freely.

So, entitlement.  It's a problem among kids and adults.

I really liked this book for a few reasons.  One, the topic.  It needs to be addressed.  Two.  It is easy to read.  It's fast, not filled with thick language.  I don't mind scientific, but this was nice.  Three.  The Eyre's give practical advice on how to achieve each of the items they address.  They don't just talk about it, they explain, step by step, what you can do.  Four.  I agree with it.  And that's always validating, isn't it?:)

I recommend the book.  Will I do all the suggestions?  Probably not.  But that's ok.  I still feel like I've walked away with a lot of knowledge and I feel better prepared for the coming years with the kidlets.

Sammy's Birthday

Marcus had the room ready so as soon as she woke up, she was surrounded by her favorites: balloons, an empty box, the grocery bag, plastic hangers, the broom, her backpack, and some plastic containers.  She was in birthday heaven!

We didn't do presents.  Instead, we opted for Chuck E. Cheese.

Callie was thrilled.  Sammy was compliant.  She was mostly fussy, but enjoyed a few "rides" with Callie.

Yikes!  I hope I felt better than I looked.

Callie, again, thrilled.

Ya know?  The whole Chuck E. Cheese thing, we knew Callie would love it more than Sammy, but that was kind of our intention.  We wanted Callie to be excited about Samantha's birthday, and I think it was a success.