Thursday, December 30, 2010

Family

Samantha,

You have a lot of people who love you.  You really do.  Callie adores you.  Today, we went hiking around Castle Rock.  I was walking with Callie, and she asked, "Where is my sister Sammy?"  I told her that you were with Uncle Colin.  Callie replied with a sincere, "Oh.  I love my sister Sammy."  She always qualifies you as her sister.  You're her sister, Sammy.  You, likewise, love Callie.  You really seem to light up around her, and it makes me so happy to see it.  I hope that as you both grow up, you're bond will continue to grow.  I felt so strongly when Callie entered our life, that a big reason for her coming to our home was for you.  I felt so so strongly that she was meant for you almost...that you two make a match of some sort.  I love you both so much.



And then there's your cousin Nathaniel.  Callie called him Famel, and that seems to have stuck.  You and Famel are pretty tight too.  He seems fascinated with you and you're pretty fond of him yourself.  I'm not sure what it is.  I've thought about it a little bit, and maybe it's because he's so fresh still...so new and clean and pure that he is able to more fully see people for what they really are.  Maybe he was told about you before he came down.  Or, maybe he watched you, knowing he'd be your cousin.  Or maybe he just thinks you're super cute.  But you sure make him light up, just like you make us all light up.

I sure love you Sammy.  You're on wonderful little lady and I feel so blessed that you are in our family -- or rather, that we're in yours.

Love you,

Mommy

Monday, December 27, 2010

The Grinch Who Stole Christmas

Samantha and Callie's acting has yet again astounded us all.  We hope all your Christmases were merry this year.

Thursday, December 2, 2010

Note from School

The following note was in Sammy's lunch bag when she got home from school yesterday:

Jenny,


We tried to feed Sammy her yogurt and granola but after a couple of bites she said, "NO!"  So, we stopped coaxing. 


She wanted to drink a lot of water, though, so that's good.


~ Argonaut Staff


This makes me smile.

Monday, November 22, 2010

Still True

January 2009

I wrote this post for Kidz a little bit ago.  It was posted today.  Over the course of a few weeks, I have certainly had my rough days with Samantha.  In fact, just the other day I was so frustrated getting her dang Theratog on her...she kept grabbing the velcro and pulling off those tabs before I could move on to the next part.  It was frustration beyond belief!  But, I have to say, in spite of her stripping off her theratogs as I try to put them on, I'm convinced Sammy's pretty close to perfect, and I still believe every single thing I wrote in that little blog post.  She's an angel.

Wednesday, November 17, 2010

Need to Clarify

I recently made a post on Kidz about the book What To Do With Your Brain-Injured Child.  There was a very valid comment and concern that was posted, and I feel compelled to reply to that, though I found I couldn't stop once I got going...so I decided to create my own post to help explain our process and experience a bit more.  I want to repeat that I truly feel like this comment was very valid.  We should question things.  When we read something that contradicts information we have received, we should investigate.  That is what I believe.  So, I thank this mother for posting that comment and making us all aware of what's out there.  If we didn't share these things with each other, there would be no point in Kidz. What community would we be if we neglected to share information with each other?  So, thank you Tiffany.  Now, though, I feel like I need to clarify some things...maybe why we choose it instead of coming off like I was announcing to the world the best thing next to sliced bread.  ('cause really, who can beat sliced bread?)

Below is what I began to post, and thought I'd just post it here instead:


Thanks for sharing that site Tiffany. I think it's really important that everyone know the full picture and not go into anything blindly, especially when it comes to helping our children. I immediately went to the article and read it. And, though I understand what is said, I question it on some points. My regular PT, old and new, use patterning with Sammy during our sessions...so the issue of patterning I'm quite comfortable with. And there has been more recent research that shows evidence of these techniques...and they aren't connected with Doman. Now, I honestly wouldn't put full stock in his institute, only because what I've heard is that they stay really strict to what Glenn Doman, the founder, developed. There was a group of therapist who broke off from Glenn Doman's group over the past few years (maybe 10) and started implementing new research with the old...what Glenn developed. As I think about the program we do with Samantha, there's so much more than the psychomotor things that the article speaks of.  In fact, we are currently doing little of that (if any come to think of it).  Instead, it is sensory intensive...but perhaps that's thanks to the group that has broken off?  I feel comfortable with our therapist who uses a combination of her training with Doman, but also newer methods. Perhaps the institute in Utah is among those people who broke off? I'm not sure. Our therapist works independently but is connected with the Family Hope Center in PA.

Due to my husband's recent job (yeah!), we just changed insurance companies.  We had to switch all doctors.  (not yeah!)  When we met with our neurologist, I answered all her questions and informed her about Samantha's history.  I then told her about this new therapy we were doing.  As I explained it to her, she encouraged us to continue with it.  It made sense to her, based on her knowledge of the brain.  Of course it was a condensed version I told her...but I told her what exercises we were doing with Samantha 5 days a week.  She seemed to fully approve and, again, encourage us.  It was a validating experience if nothing else.

Anyway, this could be such a long comment...a post in fact:)...but ultimately, there are 2 schools of thought. One is my husband's: you need, not just facts, but enough of them to make it substantial. I agree. Mine: Sometimes, if something works, I'm not going to wait until they come around. If it's anecdotal evidence, sometimes that's enough for me.  My mom and dad think echinacea cures their colds. Studies have shown NO evidence of that. My parents are never sick. It drives my sister crazy and she's always telling them they're crazy!:) I know, placebo effect...but hey, if it works and it doesn't hurt you...(though, I really do feel like at the time I was well enough informed.  I read books and articles and talked to those who had used the method.  I felt good about it.)



Could this therapy hurt? Yes! Though, I don't see how it can hurt the kids. Based on the article I read, I can see how it could rip a family a part...the time in intensive and it's quite expensive if you go to the institute in PA. But we haven't had that experience. It's quite inexpensive through our therapist (a mother who got into it for her own son...and then started doing it to help others...now traveling all over the world with clients from CA to Hong Kong), and I have felt nothing but support and encouragement knowing that anything I can do will help, even if I don't do my program 100% -- which I've never done. I actually felt far more stress 2 years ago when I was driving to 6 therapy appointments in 5 days. I had little life and was tired and busy and it was very hard to do that with a walking 9 month old in tote! Yikes! For us, this book led us to our therapist and it's been a great experience.


I feel a little sheepish now though. I hope I haven't come off an idiot or uninformed, but I really did research quite a bit before we decided, and we felt good. But perhaps I should have stated the information differently in the post. I guess, I believe the biggest things is feeling good about what you do. We're religious and so spent a lot of time praying about it and feeling, actually, guided to it and our decision. But others could easily say that was false hope. For me, it's different. But it's important to feel good about whatever therapy or medicine or doctor you decide on. We felt like when we began, we were/are ok with Sammy being the way she was/is. I'm not searching for a "cure" (which admittedly it seems like Glenn Doman says he can provide in many cases) just for something that will help her, aid her, in her progress to be whatever she is supposed to be...and I'm ok if she's supposed to be just like this the rest of her life.  She's incredible this little bundle of fire!  For me, though, I need to know I've wisely done what I could.  And, that may be just being her mommy, no therapy at all.  But, for now, I think there's something for me to do.  

Sheesh, was this too long? Yep:) If anyone has further questions, let me know and I can tell our whole story, or it's in pieces on our blogs. But again, no matter what, it's so important that we feel good about what we do and choose for our children -- no matter what our school of thought -- because they're our babies. I don't think there is one Cure All out there. And Doman made me skeptical based on all his work helping a vast range of people...but it just felt right for us.

I think there are a lot of parents of special needs kiddos are able to say, "Wow.  Look at what they are doing in spite of the diagnosis."  To me, that's proof of the potential within our children.  I see Samantha doing wonderful amazing things and think, "You, little girl, are a miracle."  So, it makes me wonder...what if I were to find what works for her, that somehow unlocks the door to allow more of that to shine through?  What if I understood the brain better, how if functions, how it changes, how it's so easily molded, and use that knowledge to help her and my other kids?  For me, through priesthood blessings and prayer, I feel like I've found something that works for her, for now at least.  I haven't given up on other therapies.  We still have PT and OT in and out of school...and I'm looking into Now I Can for an intensive session.  But, I feel so much peace about our decision with this.  No matter what, though, Sammy's always our lil' Samsquatch.  One heck of a girl.


So, anyone want to read a novel? Because if you made it through this comment, you just did:) (you may be able to mark it on Goodreads! ha!)

Tuesday, November 16, 2010

Still There

Sometimes I can get a little excited about momentary happenings...like Sammy saying words, and then she doesn't say them again for a long time.  I still classify all those "little" things as BIG things and usually it doesn't get me down.  But I get extra super excited when I notice that whatever it is I saw is still there days after.  Like, saying "more" and "water." 

Today, before the bus came, I decided to be unhealthy and let her have some cake for a mid-morning snack.  It was there, I thought, what the heck.  It's good motivation.  I gave her a bite.  "mmmmm"  I gave her another bite.  "mmmmmmoo"  I went to give her more, but she just smiled, as if she was thinking, "Come on Mom.  We both know you're going to give me that cake no matter what I say."  But I didn't.  I didn't give her that bite until she said, "mmmmmmmoo" -- and she did. 

Her mouth was getting pretty dry.  I thought she may want water.  I held the cup, and before I could ask her, she said, "wa-ya.  waaaa wooo."  I'm calling that water. 

So, it's still there.  The girl's got words.

Sunday, November 14, 2010

Words Words Words

The other computer is down and so I won't have any pictures to share for a bit, but we have some good news today.

Words!  Samantha didn't say any NEW words today, but she said significant meaninful words.

While she ate, she clearly told me "more" over and over again.
I asked if she wanted water, and I swear she said "water" and started immediately drinking from her cup.
Later, when we were doing some therapy, she was very unhappy about the light in her eyes.  I said, "Sammy, if you want me to stop, you'll have to tell me 'no'."  She looked at me and said, "NO!"

I love her words!  This was a very exciting day, indeed!

Wednesday, November 10, 2010

Therapy Update

Samantha dear,

Well, we are back on track, I'm happy to report.  Yes, I took a couple weeks off doing some therapy with you, and it was hard to get going again.  We were hitting...oh 50% or something.  I hated that I wasn't doing what I should be doing, but I couldn't find the umph to do it after all of us being sick.  So, I decided to SNAP out of it.  And I called Patty.  And it did the trick.  I think I just needed to hear that it was ok to take those couple weeks off while we were sick and then just do the best you can do.  After all, she said she just did the same thing with her kids...and she informed me that Decembers in their home is pretty much therapy-free.  It's good hearing from other moms doing the same thing.  I never thought I was someone who "needed" that...a group of sorts to buoy me up.  But golly it looks like I am after all.  What have you turned me into lil' Sammers?!  Oh, I love you for it.

So, here's the official update lady.  I'm really proud of you.  You've done some great stuff lately.

Eyes: I think your eyes are officially dilating and constricting like ours.  Quickly.  They shrink up pretty fast when we can actually get a look at them.  Today, while you were eating breakfast, I flashed the light in your  eye.  I know.  We weren't in a dark room, but we were pushed for time and I wanted to do it.  Even, in the daylight, I could see an immediate change ... shrinking of that pupil. So, that's that.  We'll keep doing it until we hear differently, but I think your eyes have actually been like this for a while now.  So, yeah!  (Hopefully when Donna comes back in January she'll agree.)

Startle: Remember how before, when we'd try to startle you by banging pots and pans or blocks together you just looked up at us like we were annoying you?  Actually, most of the time you'd smile at us.  It's cute.  Well, I didn't realize what we really needed was for you to jump a little bit.  So, we've been working, and your startling has WAY improved.  We were hitting about 50% on a good day.  Now, we're getting between 70-90% of the time.  I have decided that the times you don't startle, I think it's becuase you see me and what I'm about to do...but I carry through anyway.  See, I'm supposed to be sneaky about it, and this mama just isn't always so sneaky.  Because, really, you are beginning to startle to noises just around you more often.  For example, I turned the stereo on and it was a little loud...a song was playing...and you were shocked, but then smiled.  A door slammed yesterday and you startled.  Callie threw something on the deck (yes, out of 2 year old anger).  You were inside, but the door was open.  You had been concentrating on some task and when you heard that, you startled...immediately popped your head up and had a look of concern.  So, I call this improvement.  But, again, we'll continue to do it.  I'm not confident that you have it yet, but I think you're making fantastic progress here.  And let's be honest, it's kind of fun to scare you.:)

Textures:  This is the hardest for me to do because I don't think I have a really good variety of textures...so I'm working on that...but also because it takes longer.  I know, we're talking seconds here, but still.  You're not too cooperative during this either, so it's just the exercise I dislike.  Ok?  There it is.  I don't like doing this one so it gets put off.  In terms of progress?  I think it's about the same.  I can tell you like or dislike certain textures, but I'm thinking it's not enough. 

Sound Location:
  Hello!  Huge improvement here.  Really.  You are starting to be able to locate sounds almost 100% of the time...quickly.  I've only been focusing on periphereal, above and below.  But, I've noticed you turning to sounds that are behind you.  These aren't sounds that I'm creating for therapy, but just sounds.  So, you're more quickly picking up stuff behind.  Yeah.  I'll be starting to work on that next.  I want to finish the week off strong and I want to practice with some more higher pitches this week.  It seemed like there was one that you were slower at finding...and I want to make sure you get that.  I'm not sure if it was the pitch or the distractions in the room.

Smell:  Well, I've discovered you don't like cloves.  Either does Callie.  I don't get it.  mmm  Cloves.  Oh well.  We'll keep introducing you to smells though until I get some more, real distinguishable likes and dislikes here.

Hands:  I love your hands.  I feel like, again, they are just so much more open.  I'm trying to work on having you USE your open hands now more effectively, but ya know.  In time.

Babinski Reflex:  Same.  You are in new DAFOs now that are set to neutral.  Before you were in a heel kind of, which I totally hated, but you had lost so much range that we had to put you in those stinky heeled DAFOs.  But now, you're in neutral and are standing up so much straighter and are a super star.  We are working on integrating your Babinski reflex.  Your new neurologist actually thought that you had an integrated babinski in the one foot, but then you didn't do it again.  So, maybe that's a sign of improvement...headed in the right direction.

Keep working Sammy.  You are awesome!  You impress me everyday.

I love you,
Mommy

Friday, November 5, 2010

Sisters

Sammy,

You have a little sister who loves you so much!  It's really sweet to watch.  She's (mostly) happy and caring and tender and wonderful to you.  The other day, while you were at school, we went to the park.  On the way there she said, "I want to go to the park with Sammy."  She kept insisting we get you from school so you could play together.  While we were at the park, she was telling her new friends there "Sammy is my sister."  She loves you.  And the cool thing is, even if you don't always cooperate with her hugs, you pretty much love her too.  You light up when you see her.  She makes you smile and laugh.  It's pretty fun to watch.

Feeling blessed,
Mommy


Thursday, November 4, 2010

Oh That Face

 Samantha,

You have the most expressive face, and I love it!  I'm grateful for it.  This is just a quick sampling of some of your funny and happy happy faces -- that first one is pretty stellar, don't you think?

I love you!
Mommy






 


Wednesday, November 3, 2010

Monday, November 1, 2010

Cutest Patient Ever




And that's one pretty cute doctor too.

Happy Halloween 2010.

And Chloe...though I don't know you, I'm not feeling any creep-factor.  Read all you want.

Sunday, October 24, 2010

Seizure Meds?

Dearest Samantha,

You have been such a little gem the past two days.  You have quite honestly glowed and it's been so fun.  Today, in particular, you were a delight.  I'm talking pure delight.  Good stuff there.  You smiled a ton.  You giggled.  You enjoyed a 2 hour walk with me without complaint.  It was a good day.  And, though I'm not sure what will happen tomorrow because of it, we forgot to give you your seizure medication this morning.  And it just makes me wonder...how is this stuff really affecting you?  I mean, I know it helps with the seizures, but how does it make you feel?  I wonder if it makes you sleepy and thus, irritable sometimes.  Though, honestly, you are usually a happy girl, but even still...I wonder.  The days we have forgotten your morning dose (we are responsible, I swear), usually on rushed Sunday mornings, you are purely magical...people become even more smitten by your smit-ability.  My dear, you are quite charming.  But, we will continue with the medication until you are stable (seizure free) for a year.  Sorry.  Doctor's orders.  We'll see.  But I sure love you, even when you're a little cranky.

Forever your mommy I'll be.
Mommy

Thursday, October 21, 2010

Too Cute

There are many reasons why people blog.  Some people do it to make their voice be heard...to take a stand and spread it to whoever will listen..er...read.  Some do it to connect to other bloggers.  Others do it to journal.  I lean towards this.  I use blogging to remember thoughts, feelings, etc.  But, I certainly do it to connect with others -- especially with Sammy's blog.  I created this for her/me/our family to remember this time and to be able to recognize God's hand in our lives.  Through seeing the ups and downs of it all, hopefully we'll be able to also see the miracles and the purposes behind it all.  Definitely, as I've read older posts from our family blog, I'm reminded of the tender mercies from the Lord.  It's been a cool experience.

But it's also super fun to see pictures like these from time to time.  I stumbled across these pictures of Sammy and was just, well, delighted to say the least.  Recently, I've noticed how old she's getting.  Her looks really are changing.  And as cute as I think she is, there's always something about "baby" pictures, or younger pictures.  She's too cute!  What a babe.  ahhhh 

Tuesday, October 19, 2010

Microcephaly

Microcephaly affects 2 - 2 1/2% of the entire
population.  Microcephaly is COMMON - it is far more
common than other well known disorders (i.e.
Autism).  Microcephaly affects more than 25,000
infants in the United States each year.  

If it's so common, how come nobody seems to know about it? Whenever I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have to explain this statement above.  It can be tiring.  Sure, Sammy's type of microcephaly is rare, but microcephaly in general isn't.  And how come whenever I type it in, there's a red squiggly line underneath "microcephaly" and the spell check doesn't recognize it as a word, even though it's a legitimate condition that 25,000 infants are affected by each year in the USA alone?  I'm not sure, but I'm feeling a little...blargh...about the whole thing today.  I guess I need to think of it more like...every time I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have the opportunity to educate them.  That would be a better attitude.  But come on...

I think about all these other conditions/diseases/disorders that are raising good amounts of money.  I don't want to discount their work or their need...that's not my point here.  But I wish microcephaly somehow was able to gain more recognition so that we could find out stuff about this...about my child.  I'm glad when people raise a ton of money for their kid's cause; again, that's not my point.  It's just...sometimes I feel -- discouraged?  I'm not sure that's the right word either.  
Guess it's just one of those days.

Neuro Therapy Update

Samantha,

We've been working really hard, trying to do all your therapy as best we can at home.  You still get PT with Kathy and OT with Tiffany through CCS, but we are supplementing with this therapy at home.  You know the drills.  You scored really low for your neurological age.  Bummer.  I think you tested at 7 months!  Woa lady.  You aren't 7 months anymore.  So, we're helping you get neurologically older. 

There were some basic, life saving skills that you lacked that we are trying to develop.  Like, you don't startle to loud noises.  Tell me, what would I do if you had walked out in the road, a car was coming by, honked their horn, and you laughed?  Because that's what you do now with loud noises.  Not even a cringe.  This isn't good Sammy and I can't imagine losing you that way.  How about eating anything...even if it smells Nasty McNasters?  There's a reason things smell the way they do.  We aren't supposed to eat molded food or excrement.  You want to put anything in your mouth.  So, we're working on your olfactory sense.  We're helping you smell better.  When Donna poked you with a pin, you didn't give any sign of discomfort until poke #10!  Girlfriend!  Are you kidding me?!  Sure, she wasn't piercing the skin, but it was unpleasant when she did it to me...and it was for you too.  But your reaction is a bit slow.  So, we're sharpening up the sense of touch by rubbing textures all over you.  I'll explain it all to you later.  In the meantime, keep letting me do what I need to do.  Ok?  Because I sure love you. 

I'm going to keep our progress here for you.  Then we can go back and check it out...see the progress.  I love you sweet girl.  You're doing great!
 
Eyes:  We are using a flashlight in a dark room to practice dilating and constricting your pupils.  I think you've made improvement here.  But I still need to compare your pupils with Daddy's.  You have started to hate doing this, so I give you an M&M after each time.  You're a little better during the sessions because I think you anticipate the chocolate?  Or maybe because you're just giving me a break on this one.
 
Startle Reflex:  You are starting to startle about 50% of the time now.  That's an improvement.  You still giggle, but it's after a little jump.

Hands:  We're working a lot on your hands, and girl, I've seen a ton of improvement here.  I didn't even know if you could open your hands!  Ok, I'm exaggerating, but still . They are always so tight and red; but now, your hands are much more open.  You are gripping things better.  I think this has to do with this exercise combined with the texture exercises.

Babinski Reflex:  So, tell me Sammy.  How are you going to properly step if you've never integrated your babinski reflex?  When something hits your foot, your toes still curl upwards, like an infants.  Taking a step will be harder if your toes naturally want to curl up.  So we're still working on integrating that to making your toes push down, like mine do and Daddy's and Callie's do.  You'll get there.  Hey, you're walking and they said you wouldn't.  So I know walking properly can be done.

Textures:  You are much more quick to get goose bumps and tell me you aren't happy with a rough texture.  You laugh, but it's a complaint.  It's on the verge of yelling at me or crying.  Whereas the soft textures, you giggle or smile.  Futhermore, young lady, when we were at Dr. Nachbauer's last week, you developed a poopy diaper and you really complained and cried until I changed it.  You have never done that before  Then I got report from Nicole at Scribbles and Giggles that you did the same thing there.  So, I'm pretty excited about that.  You should want your diaper changed, and now you do.  Yippee.

Locating sound:  I'm still working on sounds in front of you and in your peripheral range.  I know you can hear.  That's never been the question.  But you have never been able to locate where the sound comes from.  You struggle the most with up above and to the sides.  But you've improved a lot on your left side...the right side, last week, was still lagging.  Now, though, you are consistently responding more quickly to sounds on your right.  This has been fun to watch the past 2 weeks because there's been a lot of improvement.
  
Smell:  I've seen a change here.  I've mainly been working on good smells.  We've done lemon, orange, cinnamon, mint.  I just don't have a good variety of "bad" smells.  Ok, I have none.  I really need to work on that.  Anyway.  You are starting to really smell them instead of me just passing it along your nose...and after you smell it, you want to eat it.  Before, you wanted to take a bite out of it before you even knew what it was.  Twice I've taken a nasty diaper (I know, is this borderline abuse?!) and passed it by your nose.  Yuck to the max!  Both times you cringed.  You pulled up her nose, turned your head away, and pushed my arm away with your hand.  So that's HUGE progress I think.  Remember when you wanted to eat the barf smelling thing that Donna put in front of your nose?  Gross.


So, we're making progress sweet girl.  Just keep on keepin' on, and we'll see even more changes...I just know it.


Love you!
Mommy

Saturday, October 16, 2010

Smile

Samantha,

Before the school bus comes is a happy time in our house. Not that we're happy that you are leaving for a few hours, but you always seem really happy. Maybe you are anticipating school. I think you really like it there. You like your teacher, Kathy, and the aides, Claudia and Sharon. And they sure love you. A lot.

Most of the time, we wait outside for the bus. We sometimes wait for the school bus inside. When we're inside, you like opening and closing the front door, playing with the shoes (and when I say "playing" I really mean throwing), and playing the piano. You're one talented girl, you know that?

Here are some pictures from a little bit ago. You sure looked cute that day. The video isn't the best, but it makes me smile whenever I see it anyway.

I love you!
Mommy






Thursday, October 7, 2010

Standing Straight

Aside from that crazy look, I sure like the way you're standing straight Sammy! Good work! Keep it up little lady.

Wednesday, October 6, 2010

Smurfette

A few Sundays ago...after getting home from church, we went in the backyard. Um...actually, I took a nap and Marcus took the girls out back. When I woke up, Marcus led me to Samantha so I could check out the newest Smurfette. Yes, she started chewing on the chalk. Non-toxic chalk? I hope so. Sheesh. She does look good in blue though.

Thursday, September 30, 2010

I Know

Samantha,

There are some days when I am so sad that you can't just tell me what you want, need, or think. It's not so much because there's this inner-aching within me to hear your voice...though that is there definitely, but because I simply want to know. I want to know what you're thinking. I want to hear everything you have to say. And yes, I'd love to hear your tiny voice tell me the things all moms want to hear...that you love me. I melt every time Callie tells me, so I'm pretty sure you, Sammy, saying it would have equal effect. Today you spontaneously kissed me for the first time in a VERY long time -- though you freely give kisses to Colin! -- and it made my day by the way.

My friend sent me the Meaghan Smith cd. There's no secret, I'm totally loving this girl. I love her style, her awesome voice, and you and Callie love dancing to "Heartbroken"...but when I got to the song "I Know" I immediately thought of you and all of my favorite scenes from your life passed through my mind. I know this is a love song, but I'm so in love with you -- my tiny little girl. And whether you can vocalize it or not, I'm pretty sure that I know you love me too. And I'm pretty sure, one day you'll tell me in words. And I'm also pretty sure that every time I hear this song, for the rest of my life, I'll be thinking of you.

I love you!
Mommy






It's in our hello
In the way your smile glows
And it's in our good bye
In the tear in your eye
And all in between
When you're lookin at me

I know, I know, I know
What you don't say

It shimmers through
In the things you do
When you write me a note
And send it by the post
What you might not sign
On that bottom line

I know, I know, I know
What you don't say

Words are not needed
And though my ears
Could be misled
My heart can hear instead
What goes unsaid

You'll leave me with this
A hug and a kiss
And that little phrase
Those three words
You can't say
But please don't feel blue
Cause I always knew

And I know, I know, I know
And I love you too

Monday, September 27, 2010

Sweet Moment with Samantha

I've been looking for this picture for a long time now. I haven't been able to find it. This was taken a few years back. Just days before Samantha had her craniosynostosis surgery, our friend, Jeff Allen, took some family pictures for us. He's a fabulous photographer and you can see some of his work here. (Plus he has an awesome wife.) He got a good family picture for us, but this was my favorite picture of the entire day. I am so self-conscious that it's hard to get a picture of me in the moment. I'm always so worried about my big nose or uneven smile...(I know I know...I need to work on that...blah blah blah...be confident...blah blah blah). So, because it's not-so-easy to get an in-the-moment shot, there was just something about this picture that is so precious to me. It is that instant...that sweet moment with Samantha...when I'm just talking to her and being her mom...protecting her from the cool March air. I love this picture.

Jeff, I'll always love you for capturing this moment for me. Thanks.

Saturday, September 25, 2010

A Plea

Samantha,

For the love....STOP waking up at 4am. And if you do, go back to sleep. No more. We're done.

My threat stands. If you keep waking up like this all next week again, I'll still love you, but I make no promise that I'll like you all that much -- at 4am anyway -- you usually have a way back into "like" by around 8am anyway you tricky girl. But really, just because your grin and giggle makes me weak does not mean you are allowed to wake up when it's still very dark outside. It's not good. Not good at all.

I'm standing firm.

I love you.
Goodnight.

Mommy

Tuesday, September 21, 2010

What To Do About Your Brain-Injured Child

I don't know where to begin. About 6 months ago my life took a dramatic turn. Someone introduced me to Glenn Doman's work, and I began reading all of his books. They were basic parenting books -- how to give your children knowledge. I thought of Callie as I read the pages, though my friend said she thought it would be good for Samantha too. It wasn't until a few weeks ago that I read What To Do About Your Brain-Injured Child. This book is, to say the least, revolutionary. In it, he details all their research and how his program came to life.

After fighting in the Battle of the Bulge (interesting), he became a physical therapist where he worked with many stroke patients -- old and young. After a years time of massaging, stretching, doing exercises, no one showed any improvement, and some, even, were worse. How could this be? What he realized was that the traditional methods (back in the 1940s, 50s, and 60s) were only attempting to correct the symptoms of the real problem. The real problem is what he calls "brain injury." The injured brain could have received its injury before the baby was even born. Or, the injury, such as stroke, occurred later...post-natal. Of course this is the reader's digest version of the reader's digest....but he got a team together -- with Temple Faye (renowned neurologist...interesting article using his methods for autism found here) and other knowledgeable people in their fields -- to work together to come up with some answers. Why aren't people getting better? How do we fix the brain? What are parents supposed to do with their brain-injured children?

After coming up with a "plan" to help their patients, the results were phenomenal. As they did "exercises" that "exercised" the brain, patients were walking who had been in wheelchairs their entire lives, blind patients were seeing, deaf patients were hearing. Nearly 100% of their patients showed improvement after a year's time, and most showed significant improvements.

Doman and his team didn't claim to be miracle workers...just doctors who wanted to really fix the problem. He said there are a few cases that they couldn't help. But due to the impressive results, the received funding necessary to open a clinic and doctors and patients were coming from all over the world to Philadelphia to see and learn for themselves. That institute is still there. They still see patients. Other institutes throughout the world have been opened (Japan, Argentina, Brazil) to do this work within their own regions.

What is interesting to me, aside from the dramatic results that they saw, is that at one time these methods were considered extremely radical...yet today, some of these methods are widely used. Patterning. Oxygen therapy. Some of this stuff doesn't sound so strange anymore. Though some of the old school traditional methods are still used, they are often blended with the discoveries made by Doman and his team decades ago. They are becoming more and more mainstream.

I have mentioned this before, but I have always felt like I needed to keep searching for Samantha. I feel like we've had some amazing therapists, but they didn't have all the answers that Samantha needed...and then, Elaine led me here. I can't tell, after all the researching I've done to find out more about these methods, read the medical journals, etc...I can't begin to explain the peace I feel. I don't feel the need to keep searching because I finally feel like we have found it for her.


I don't believe I'm as naive to believe that Samantha is going to be "cured" or miraculously "healed," but I do have faith...and I would even say spiritual confirmation that we have commenced the proper course for Samantha for her to achieve her potential. I'm not looking for Samantha to be healed, I'm looking for her to be the little girl Heavenly Father intended her to be in this lifetime. For many reasons, He intended her to be microcephalic, with seizure disorder, developmental delay, etc. I'm ok with that, as long as I'm doing what I'm supposed to be doing in this lifetime, and becoming who I'm supposed to be, too.

Sammy and I -- and Marcus and Callie and Grammy and Bampa and Colin and Grandma and Grandpa and and and -- we're all in this together. And I'm so excited!

One thing I'd like to mention is that his therapy program, though varying from child to child depending on their needs (just like any other therapy, hopefully) is very parent/family-centered. A therapist came from Texas to assess Sammy and set up a routine that we do with her at home daily. It's been good so far.

Whether you plan on changing your methods of therapy for your child or not, I recommend this book. It's easy to read and understand and is just very eye opening.

Monday, September 20, 2010

LAME

I know I'm not the smartest cookie out there, but WHY oh why can't I get Sammy's picture up there centered?! Frustration.

Saturday, September 18, 2010

Great Expectations

I've been thinking a lot about my expectations for Samantha. Do I expect less from her because of her condition? Do I expect less from her because others do? Shouldn't I, as her mother, have higher expectations than others do? I've thought a lot about this recently and wrote about it. I decided to share it with Kidz because I thought, maybe I'm not the only one who has experienced some of this...the fear of expecting too much and then getting "hurt," or struggling with how much to expect. You can read it here.

Friday, September 17, 2010

Not Fun

(PT would not be happy seeing her sit like this! Oops)

This happens every time...and I still never learn. I read about everyone's kids and their seizures, and I remember. I remember the days with 10, 15, 20 seizures. I remember using Diastat every other week. I remember taking turns each night with Marcus, sleeping with Samantha on the couch, just in case she had one and we had to give her Diastat. I was so afraid that she would have a seizure in the middle of the night and not wake up.

We played around with her medicine and dosage quite a bit. Nothing really worked. I started doing craniosacral therapy with her, and amazingly, things started to slow down. She was stable enough that we were able to wean her off of one medication completely (phenobarbital), and lower her incredibly high dose of Trileptal. We did craniosacral therapy for about a year. I found therapists who were kind and gave me a great deal. When we moved to Spokane, WA, our insurance actually covered it and we loved our Shauna! Samantha just loved her. I think she (Samantha) could tell that she felt better when she saw Shauna.

It's been almost 2 years now where I feel like things are relatively stable. Due to the Green Family Funds, we don't do craniosacral anymore. Maybe we will again soon if I can find someone. But even still, Samantha does pretty well. And when I read about seizures again, I can't help but ache for all these parents, and then also think, "Oh I'm so glad we're passed that."

And then something happens like this morning. Samantha has a cold. I am holding her as she is trying to fall back to sleep. I think she's asleep when her head suddenly jerks up. Her body goes stiff, then begins to curl in a little, and I hear the noise...the noise in her throat -- the clicking. We think it's her tongue. She doesn't breath. I put her on her side so the saliva can come out (we've learned from past experience that if we don't do this she often vomits after). I whisper in her ear, "Come on Sammy. Come on. It's time to stop. We're all done now. Come on. Come on. Coooome on sweetie. I'm here with you. It's ok. It's ok. It's ok."

It's not ok. It's really really not ok. Her seizures are relatively short now. 1-3 minutes. It looks as if she isn't breathing, but she gets enough, they say, during that short time that she should be ok. And when I asked her neurologist about her dying from a seizure, he tells me how relatively rare that is. Usually the seizures are secondary to something else that cause the death. But it still bothers me. And I still think about it.

I laid in Callie's bed with Samantha this morning for a long time. She was sleeping, but I didn't want to leave her. I let Callie watch some tv while I just held Sammy.

And then, once she was up, she was fine. You would have never known that her brain went haywire just a few hours previous. Seizures are NOT fun. Never. No matter what. I am grateful for her progress, but I still feel a little deflated every time she has one, and I'm reminded that this is real. That as great as I feel, as optimistic, as wonderful as I can feel about things....Samantha's fragile life is real and there are things that will happen that I don't like...that I will never like. I guess I was in need of another reality check or something.

At least she's still so dang cute!

Wednesday, September 15, 2010

Appreciation

Today I was inspired by my friend who's living A New Kind of Perfect. Her post today reminded me just how grateful I am, and I wrote about it over at Thru the Tulips. It's good to have friends that remind you of all those good things in life. Thanks friend!

Tuesday, September 14, 2010

Redemption

Well Samantha,

You have redeemed yourself. After a fabulous night's sleep (I'm talking 7:30-6am), you were a delight in school today. You know how I know this? Because your teacher sent home a little note that said, "Samantha had a wonderful day today!"

So, there you go. You're redeemed.

Love you,
Mommy

Monday, September 13, 2010

Shape Up

Samantha,

We're going to have a serious one-way discussion here, ok? I talk. You listen. I'm your mother -- you remember that. Now...today you received your first "bad" letter home. That's right. I was surprised and a little disappointed. It stated that you were "unbelievably fussy and crying" today. Now now. Is that a way to treat your teacher and aids? Last night I cut your hair. Are you upset with how that turned out? Or perhaps it was because you woke up at 4am. Could we work on that? Do you think if you slept longer you could be happier during the day? Let's put a good honest effort into getting good sleep. Ok? In the meantime, I don't want any more notes from your teacher. You're a sweet girl, and that's how they know you. So shape up missy pants. We all love you and are behind you 100%, but you got to give us a smile from time to time.

Love you unbelievably.
Mommy

Thursday, September 9, 2010

Reality Check

Samantha,

You are a light in my life. In so many ways, you make me a better person. You give me perspective and true happiness. You inspire me.

I'm working on a book ~ because of you. Because of what you have taught me. Because of the road you've led me on. A book. This morning I emailed someone who is contributing a part of this book...and I cried. I wept as I wrote about how her story was inspiring...but I wept because of what she went through. She lost her son, at a very very young age. And I kept thinking of you. What would I do without you? I would feel so empty.

And then I read a blog post of a friend of mine. She wrote about her daughter, Leah. Remember Leah? Though you both are so different, she reminds me of you. Her smile that brightens the entire room. Her big, shining eyes. Her long hair always done up. (I try Sammy. I really do. It may not look nice by the end of the day, but I try.) And then there's the lack of control over your bodies. And the lack of verbal communication that must make it so frustrating for you both. Leah is so precious. She's a good friend to have. And her mom was writing about Leah, about how things happen that are out of their control, and how she fears losing her. I've been an emotional mess. The thought of Leah leaving them is killing me. I don't think it's in the near future, but I ache right now for them. Ache.

As I've been working on this book, I've been thinking a lot about faith and hope. These are good things. Great things. They are what keep us going. And that is precisely why I'm doing this book. But, today, the reality of the lives we live hit me. No matter how much faith you have, there is still real pain. Job was a very good man, but he wasn't spared pain and horrible trial. Faith will help us, but we still have to go through it all, and sometimes, I just don't want to. I don't want my friends to. I don't want anyone to go through it. I can struggle through the years with you, but the thought of having you go...I can't really bear that right now. So stick with me kid. Ok? Because I think I need you for a little longer.

Love you to pieces,
Mommy

Wednesday, September 8, 2010

Do You Know?

Sammer,

Do you know how much I love you? I sure hope so. Tonight, you were such a sweetheart, I just kept thinking, "I love you so much. I just love you so so much." You were a little fussy, so I decided a bath was in order. It has always worked for you. Even as an infant...when you were crying non-stop for the first 6 months of your life ~ that was a real dirty thing you did little girl -- not fun indeed ~ a bath would help you calm down. Needless to say, you had a lot of baths. And tonight was no different; the bath calmed you down. You played. You splashed. You talked up a storm! And then after you got out, you played a little more. About 1/2 hour later, I picked you up, getting ready to put your evening casts on, and you were out...like a light! You fell asleep in a manner of minutes, all curled up into my chest. When you are like that, all curled up into me and calmly sleeping...I could hold you forever like that.

No matter the package you came down here in, you are a pure angel.

I love you so much. I just love you so so much.

Love,
Mommy

Friday, September 3, 2010

Rylee's: The Reason to Snack

Ok, if I had my own chip company, I would totally do this...but alas, I do not. But luckily Rylee's family does. Rylee is a little girl, born with microcephaly. Her family created Rylee's Snacks and I'm so excited about this that I'm about to run to Whole Foods and Trader Joe's to find out how to talk to their buyers and get Rylee's Snacks into their stores! Rylee's Snacks are kettle chips made preservative free, and all that other good stuff, and part of the proceeds go to the Foundation for Children with Microcephaly! How cool is that?!

I've always had a desire to do something really big for FCM...to raise awareness, to raise money, to...I don't know...make kettle chips and sell them to the world! I'm so excited for this family and for the larger-than-we-think "micro" community.

Hip hip hooray!

Read the article on it here.

Thursday, September 2, 2010

Hands


Samantha was born with hands, but she has never used them properly. Most of the time they are tight, balled up into fists. They have been this way since she was an infant. We have worked on having her open them up, and we've seen improvements...but she still has a long way to go. There have been moments when she actually even relaxes and we see her hands laid out "normally" on a surface. That's quite a sight, and I get really excited!

Recently, with our new at-home therapy program we are doing, I do an exercise with her hands. I think I'm supposed to do it about 10 times, but I do it all the time...every time I think about it. And lately, that's been a lot. Plus, Analisa, my wonderful sister-in-law, regularly does these hand exercises with her. It takes about 2 minutes, and we're done.

Results? In 2 short weeks, her hands are opening up. She doesn't fight me anymore. This morning, even, she sat still as I did it...stretching her fingers back as far as they'd go. It was amazing. Earlier this morning, in PT, Kathy was shocked at the use of her hands! She asked me if this was because of the program we had started -- I told her that I didn't know exactly, but there has been definite changes since we started. That is soooo exciting!

We are all born with parts of our bodies for a reason. We have hands for a reason. And what if, just what if Samantha could use her hands better? Maybe she could explore more. Maybe she wouldn't feel the need to put everything into her mouth because she could explore with her hands instead. Maybe, she could one day she could even feed herself! Oh, the possibilities are endless when you can use your hands! AHHH Wahoo for progress!

Tuesday, August 31, 2010

Workin' the Flashlight

Yesterday I officially began therapy with Sammy at home. Yes, this new neuro program. We are starting small. For two weeks we will work on one thing, and 2 weeks later we'll add to the program. This week, we are working on Samantha's eyes. Interesting. I've had her eyes checked by a pediatric ophthalmologist at Primary Children's Medical Center in Salt Lake, City, and things checked out fine. But even still, I've frequently had therapists ask me how her vision is. They ask because it's probably routine, but when they ask me again, it's because they feel like her vision may not really be all that great. I know she can see me across a room. I am very confident that she can "see" but how well is she seeing? I do also know that depth perception is definitely not so great. But aside from that?

When Donna came and evaluated Sammy, she noticed that her pupils were rather large. And when she did a quick flash of light, they were slow to dilate. There is a reflex within the eye that causes our pupils to dilate according to the amount of light. If they don't do that properly, then they can't appropriately see images as well...and if she can't properly process the amount of light, how can she possibly move on to a larger "eye" task of depth perception?

One thing that is incredible, is that we can develop this reflex by practicing it. As we do so, the brain gets that stimulation and learns how to process it. So, how are we improving this reflex? Yep. I'm flashing some light in her eyes for a second at a time. Sounds crazy, I know. And many will think this is a pile of bologna...but you can think that. That's ok with me. I was worried about flashing light in her eyes, but then found out that the only dangerous light to our eyes are UV light...and as amazing as the flashlight is, it doesn't have those rays in it. Nope. No tans coming from this flashlight.:)

So, the week begins. I'm to do this 10x a day. Yesterday I did it 4 times. Oops. I have found that it's harder to schedule it in than I thought it'd be. Maybe I just have to get into the routine. So, here's to week one!

Friday, August 27, 2010

Neuro Developmental Therapy

Samantha has had many priesthood blessings during her short life. All of them have brought me peace in the moment, but some of them I think of often. The words run through my mind and I am constantly reminded of blessings the Lord has in store for her.

When she was born, her great grandfather gave her a blessing. Because of certain things that were said, I have felt that there are things we need to do in order to help her achieve her earthly potential. I have tried very hard to be her advocate...to do whatever we can to help her progress...to take her therapies seriously, etc. But, I'm also just her mom...so I love and hug her as much as I can, and if she's upset...well, I've been known to tell our therapists, "I think she's done for the day." BUT, I can also be one tough cookie. There's got to be balance, right?

There was another blessing she received where she was told her head would grow. I remembered being shocked. Samantha's head measured small in utero, but continued to grow...until she was 4 months old. At that time, her head stopped growing, and measurements have been the same since then (32 cm) and she is now 4 years old. No growth. But, I have faith in that blessing. So, how can that be? Well, maybe in the next life. I asked her neurologist once about brain growth, and he said, "Well, as long as progress is being made, the brain is growing. It may not be measurable, but there's some kind of growth." That satisfied me. I felt like as long as Sammy was progressing, there was fulfillment to that promise.

About 8 months ago I spent many hours reading a series of books by Glenn Doman. I was intrigued and read as much as I could. He has an institution in Pennsylvania where you can get your child evaluated and put on a program. I felt pretty sure that we needed to do this, but I didn't know how to do that. A friend directed me to Patty, a woman in our stake, who had gone through a program based off his research and saw huge successes with her children. I immediately called Patty. She told me her story (her story consisting of 3 of her children) and told me about Donna Bateman...a therapist who was trained by, and continues to work with, the Family Hope Center -- an offset of Glenn Doman's institute, pedagogy, etc.

Long story short -- we met with Donna. She flew out to San Jose and did an evaluation on Samantha. (And, this was way way way less expensive! She's a mom who became trained herself because of her son who had his own problems. She is now wanting to share this with the world...and does.) She did an evaluation on Samantha. She got us set up on a program. And we will begin next week.

The idea is that you need to start at the basics of the brain. There are certain reflexes, reactions, skills that kids should have. If they don't, then we need to go back to those and work on those before we can move on. It's so much more than that, but this post is already too long. We went to a seminar that explains it all (though you can get all the information in Doman's books), and Marcus, who is spending many hours a day studying for the EPPP (psychology licensing test) found that what they were teaching us matched what the scientific world knows and says about the brain. So, no funny stuff here. Marcus, the good man that he is, is often leary about what I introduce. He wants facts. Research. Stuff to back it up. But, he usually goes along with it as long as he doesn't see any danger in it. This time, we both feel so good about this path we're pursuing, and I can't wait to begin.

Side note: Research has shown that with this program, brains grow. And not just how my neurologist told me...but the actual measurements change. I can't help but wonder if we will see any changes, if this will be a greater fulfillment of the blessing Samantha was given. Either way, though, we press on.

This Mare Eats Oats

Maren, a friend of mine from back in our BYU days, is a fantastic person. Our paths crossed for a short time at school, and we reconnected when I moved out to California. She lives not too far away, and it was fun to know someone in the area. When Maren's daughter was diagnosed with Rett Syndrome, I remembered what it was like to get the news that my life was going to change forever. That I was entering the "special needs" arena. I felt a different connection with her ~ and her attitude, her realness, her drive and determination have made me respect and love and be in awe of her even more.

Recently Maren asked a group of women to share "How I Do It." She asked li'l 'ole me to be one of those women. I was flattered. Today, my post is up on her blog. I have written about Samantha many times, but I've never sat down to think about her and our life in these terms ~ how do I do it? It was good for me to write. So, go on over and check out This Mare Eats Oats...and while you're there, check out the other stories. They are truly inspirational.

Thursday, August 26, 2010

Therapy Therapy Therapy


Where to start? We began therapy when Sammy was 3 months old when we lived in Provo. PEEP -- Provo Early Education Program. It was good for us. Sammy began physical and occupational therapy then. Robyn was our PT. I liked her a lot. She was just like a spunky, fun, young grandma. That's what she reminded me of. She was in love with Samantha -- and I assume that's how she was with all her kiddos. Annie was our OT, and boy did I adore her. She was so knowledgeable, compassionate, gentle...perfect for us. I loved it there, and we saw progress. Annie was the one who suggested craniosynostosis. She told us who to talk to and how to pursue it. She led the way for us, and after much prayer, we knew it was the right path she was leading us on.

We moved to Spokane, Washington. Internship! We would be there for only one year, but when we go the assignment, I felt like we were going there for Samantha. I wasn't sure why, but I felt it.

About 2 weeks after arriving to Spokane, we began therapy! Wow! PEEP connected us with someone to talk with up there in Spokane, and after meeting with her (and Samantha having a seizure in her office), she went to bat for us. Everything was set up so quickly. I went and visited several places to find out who I felt the most comfortable with...and I decided where we'd do PT, OT, and speech. I thought it was going to be a pain because in UT, the therapists came to us...here in WA, I'd be driving Sammy around to different locations for therapy. But, it worked. And not only did things get moving quickly, we were with some of the best in the state. I didn't know this until about 6 months into it though. It was busy. We were doing OT 1x a week, PT 2x a week, speech 2x a week, and craniosacral therapy 1x a week (and hello! our insurance in WA covered craniosacral! amazing!). That's 6 appointments in 5 days. We were busy. But her progress was incredible.

We began water therapy there as well through Center for Pediatric Therapy. (Echo was our therapist...owner and PT extrodinaire. Leanne was our water therapist. AMAZING is all I can say.) Here we were introduced to the TheraTog and Samantha's alignment and posture improved so so much. I was so sad to leave Washington. She made big improvements in the speech areas -- not that she was saying a ton, but she began making new sounds and showing some cognitive improvements. I adore and miss Carlie. The Achieve Center was a place that Samantha enjoyed going. She loved Carlie and always worked hard for her. Carlie adored Sammy, and when we moved and said our goodbyes, she cried with us.

And now we are in California. The transition was NOT easy. It took us so long to get through all the red tape and get into therapy. It took us forever to get evaluated. And it took me awhile to even really trust our therapists. That's more my fault than theirs, but I felt like we came from Heaven and my faith in them, based on our first appointment, well...I was skeptical. But time has shown that they do good things with Sammy. She is continuing to make progress. For that, I am grateful.

But, there is more to be done. I know it. I feel it.

Sunday, August 22, 2010

Living Life

I've been thinking about life lately. I suppose that's a good thing. I mean, we're all living...it's a good thing to contemplate from time to time. But as I was thinking, I realized that I'm not sure how much living I'm actually doing. Lately, I have felt that I'm doing a lot of surviving. You know that feeling? Survival is good. It's essential if we want to live. But see, they are two different things. Within our brain, we have certain parts that keep us "alive." They allow for our survival. They keep our hearts beating, lungs working, etc. That allows us to survive. What is it that allows us to live? Sure, there are higher functions that our brain performs that allow for "living," but first, what is it to live?

To me, to live is to experience. To love. To feel. To learn. We all do this on different levels. We all have different brains that will process information differently. I've often thought about Samantha and her life. I've never once thought that she was merely surviving, because it seems like every moment of her life she is encumbered with hugs, kisses, tickles, and pure love. Samantha lives life pretty well. The girl is a little love bug that people cannot get enough of. And could you blame them? She's a babe. She's incredible. And she's just so dang cute.

As we began a new therapy for Samantha, we were told that her neurological age was about 8.8 months. Crazy. I was surprised, but not all that surprised. Partly because I know she is delayed -- the average of all her tests would have placed her somewhere just a tad higher --, but also because she was pretty sick that day so I figured she wasn't going to test real well. I've thought a lot about it though...8.8 months. And her chronological age is like...50 months or something like that. Would I say she's been missing out on life? No. But that doesn't mean that I'm not going to do whatever I can to help her experience as much LIFE as she can while she's living on this earth. I want to help her develop all her senses, to feel fresh air, to express her needs and wants, to feel textures and gain strong opinions on what she likes and doesn't like (um...in a couple years I may take this back). To experience. To feel. To love. To learn. I will do whatever I can to make sure that she always lives life.

And one day, if her body is tired and worn, and she's just surviving, and I can tell it's time...well, I'll beg for her to stay and live some more before I'll accept that it's time for her to live -- to experience, to feel, to love, and to learn -- somewhere else. BUT, until that day, I'm playing the Mommy role as hard as I can.

Friday, August 20, 2010

Thru the Tulips

I was asked to share our story on Thru the Tulips. Feel free to check it out.


Also, this month my friend, Maren, has invited several friends to share "How They Do It?" How they survive their various trials. She extended the invitation about a month ago, giving time for them to think and properly write down their thoughts. They all have been so touching to read. If you have time, it's worth going over to read these inspirational stories by such amazing and strong, faithful, incredible women. I feel like I've been made better by just reading their stories. It's worth the time.

Wednesday, August 18, 2010

Missing This

Missing the Michigan beach...even if we weren't swimming, it was always a fun day at the beach.


And here's one big PLOP! Sounds louder than it was...at least there's a smile, right?

Monday, August 16, 2010

Where to Start?

I'm not exactly sure where to even start. Saturday was the seminar we attended for Sammy's new therapy, Brain Development 101, and today from about 10am-5pm Donna, from Parents with Purpose, was over at our house evaluating Samantha and then creating an individual plan for her. I can't tell you how excited I am, and how overwhelmed I am. I don't feel like the work for us will be hard to do -- rather, hard to organize.

This is short. I'm so tired. Sammy woke up at 3:45am and it was a long day with Donna. I will post more tomorrow, but aside from being tired, I feel good. I feel....good.

Friday, August 13, 2010

Progress

"Progress of the best kind is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step."
- Samuel Smiles


It made me think a lot about my life in general, but mainly Samantha. I look back at as much as I can remember from the past 5 years. I feel like there has been such progress made. While living through it, it's so easy to feel like there isn't much happening or changing, but that's because sometimes I'm not so great at seeing the small steps. I want to rush with one big, huge leap instead.

Yesterday at PT, Sammy had her annual re-evaluation. She wasn't terribly cooperative, but Kathy said that she noticed lately Sammy hadn't been mouthing things as much. Now, this could because she's more familiar with the place, and with Kathy, but in general, when Kathy exposes Samantha to something new, she isn't compelled to stick it in her mouth like before. Wow. I love that! How nice would it be (and how much healthier would she be) if she didn't need to explore with her mouth anymore? What if she could actually use her hands?! The concept is amazing to me.

There were other improvements made -- she is crawling up stairs better, she isn't jumping as much (she has more control), she is standing flat footed without her DAFOs for about 4 seconds (though we know she can do it longer -- she just wouldn't). Lately, Samantha has discovered the stovetop. This is bothersome as it means I need to be more careful, but the fact that she is exploring places that she can't even see -- before it was out of sight out of mind. This shows cognitive improvement here.

Tonight we meet Donna Bateman. I don't know much about Donna personally, but I have talked with her twice on the phone for extended periods of time. She is an incredible wife and mother (first) and therapist (second). She has travelled the world helping "brain injured" children. She is doing a fireside tonight at our church, titled "Neurological Development and Spiritual Progression." Tomorrow we are attending the seminar. And then on Monday morning, we really begin. She is coming to our home, evaluating Samantha, creating a therapy plan tailored to her, and then teaching what we'll need to do. I can't tell you how blessed I feel to be connected with her. She lives in Texas but happens to come to San Jose every 6 months. Her client base in California has grown quite a bit, so she comes up here to re-evaluate them regularly. I've heard so many stories regarding success with her program. There is a program like this only through Philadelphia. I considered going to the seminar out there...but with airfare and everything...it was so expensive. Donna is really quite reasonable. Not cheap, but far less expensive than I had figured it'd be.

What I like about Donna is that she is constantly reading, learning from other people, adjusting -- humble enough to know she doesn't have all the answers, but strong enough to stand up for these children of ours and scream at the top of her lungs "They are GREAT and SMART kids! And let's do something about it! Let's change their brains." And it happens. A little girl here was immobile. Laid on the floor. Could not move. After working with Donna (after learning from Donna and having the mother and father do some therapy at home), she is walking. Walking. I have story after story.

The other day my mom asked me what I expected from this therapy.
1) Hard work. It's going to be hard. It's not hard stuff to do -- just hard creating a schedule so we make sure it gets done.
2) A miracle. Plain and simple. I'm not sure what the miracle will be. I'm not expecting Sammy to all of a sudden say "I love you Mom." That would be awesome, but that's not my expectation. I'm expecting small progress, step by step...but that may one day help her be able to feed herself. That would be fantastic. It would be miraculous really. Or, maybe she just can stand still for 30 seconds without falling over. Or maybe she'll sleep better (wahoo!). That surely would be a miracle. Any of those things would change my life. And it would certainly change hers.

So, what will come of it? I can't give definites, but I'm pretty sure we'll see some progress. And that makes me all giddy!




Thursday, August 12, 2010

New Stuff

This weekend will be a big weekend. We are beginning a new therapy that I've been anticipating since I heard about it...and I can't wait to tell you all about it -- after this weekend. Wahoo!

A Special Child

A Special Child

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Sunday, August 8, 2010

Thinking

















I know there's more going on on the inside of that little head than can be tested or evaluated. I love you, and the potential within you is far more than I can imagine. It's just tapping into it...and I'm trying. And I'll keep trying for you.

Wednesday, August 4, 2010

Always My Little Baby Girl

Today I don't write a letter to Samantha. I just write. I love this picture of her. It makes me smile. Of course her hand is right at her mouth for continual chewing. And she's mid-shriek. Love this girl.

Last week I was at Girls Camp -- teenage girls from our church. It was fun. But I did feel apprehensive about leaving and having no reception on my phone. Marcus did amazingly well though -- first time taking Sammy to therapies and even a neurologist appointment. Go Daddy! He got a little lost, but figured it out.

I sent Marcus to the neurology appointment equipped with questions. I was expecting life altering answers. But much to my surprise, there weren't any. It was pretty simple.

Seckel Syndrome -- Yes there's a genetic test for it, but there's no need to get it done (well, that's to be determined by me...the mama...but for now I'm fine with that). The diagnosis of Seckel Syndrome is actually a way of grouping all the symptoms she has -- and she has them all. So, she has Seckel Syndrome, I suppose, but it doesn't matter? I guess not. And it doesn't change anything about the treatment she is getting, her prognosis, nada. So, that wiped out about 1,000,000 questions I had. Pretty easy.

In recently reading Samantha's past neurology report, I read something I hadn't noticed before. Sammy's head is so small, she's actually considered nanocephalic. Tonight, at the dinner table, this came up. And, her Uncle Colin said it this way, "So, in layman terms, instead of having a super small head, she has a super duper small head." Yep. Our little Sammy is super duper small. And I'm really ok with that. She may have a nano-head, but she has a macro-heart. Such a sweetie (and I can say this now because she's asleep...because believe me...today, as she threw up all over me 2 times, then all over the kitchen floor one more...I wasn't thinking "sweetie pie," though I did feel bad for her).

There are days when I feel like a diagnosis is so important -- like it somehow makes things make sense. She's this way because of this gene...or she does that because of this. But honestly, most days, it doesn't matter what she has. She's my little girl no matter what, right? That doesn't change. She'll always be my little baby girl.

Monday, August 2, 2010

Beautiful

Samantha,

You are beautiful. Sometimes I'm able to catch you in a moment and see how stunning you are. Your lips are a bright rosy red that really make it look like I apply lipstick to you hourly! But they are gorgeous. Your skin has beautiful coloring that becomes deeper shades of golden brown as the summer progresses. You tan just like your Great-Grandma Boal. Your hair is a unique honey brown that lightens up blond with silver highlights. After your surgery, when your hair began to grow back in, the geneticist said she had never seen hair that color -- so silvery blond. During the winter months, your hair is a soft honey color and people regularly stop me to tell me how much they love your hair. I've had a few people, in jest -- I hope, say they wanted a hair sample to take to the salon. Your blue eyes are magical -- they're piercing. People stop me all the time to comment on your eyes. They are striking and gorgeous. Part of it is that your eyes really are a beautiful shade of blue, but it's also that your eyes tell us the things you can't say. Through them, family, friends, and strangers can all see that you are so much more than the palsy, the cramped muscles, and the smaller head. You are determined to succeed. You are secure with yourself and those you love. You are fun and love to laugh. You have a sense of humor and look for joy in life. You are compassionate towards those who care for you -- understanding that we're all in this together and sometimes it's not so easy.

You are amazing. I love you so much. You are an angel.
Mommy

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