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 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.

Thursday, October 21, 2010

Too Cute

There are many reasons why people blog.  Some people do it to make their voice be take a stand and spread it to whoever will  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 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


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!

Saturday, October 16, 2010



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!

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


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.


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