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 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


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



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.


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