Walking

After our last session at Now I Can, I was happy with what was done, but I also felt like Sammy hadn't made as much progress as she had in the past.  Sergio and Nacole were happy with what Sammy was doing, so why wasn't I?  Sergio told me that I'd see a difference when she got home.

Well, I have seen a difference, and I was able to capture some of it on video.

One of Sammy's big problems is that she moves super fast -- she has no control.  And because of that, she hunches over.  She is definitely standing up straighter and taking smaller, slower steps.  This is actually huge progress and we're really happy.  Yes, we need to work on her upper body and being down on her heals, but I'm still pretty thrilled.  Way to go Sammers!

Week 1: Over

More pictures on our family blog

We're Back

Well, Sammy is back in therapy here in Utah at Now I Can.  I've been really distracted the past 6 months and I have not done as great doing at-home therapy with Sammy as I had been in the past.  CCS (California Children's Services) is where Sammy gets most of her physical and occupational therapy.  She also gets that and speech through school.  Previously, Sammy had PT 2x a week and OT 1x a week.  They have slowly been dwindling that down and she now gets PT 2x a month and OT 1x a month.  I've questioned the point in it all, and even asked if 1x a month did anything for her.  The response was "No, but it keeps her in the program."  And then I question, do I even want her still in the program?  At what point is enough...enough?  I think it's a question we'll all face at some point....maybe.

Anyway, I've thought a lot about it.  I've prayed about it.  And about a week ago, I feel like I really got my answer.  There is more to do.  I can't tell you how that answer came to me really, but it was an answer and I recognize it as an answer to my prayer.  And, it was motivating.  I really wasn't looking forward to coming to Utah again.  I'm tired, and quite frankly, a little burned out.  But I'm glad we're here.  This is where Sammy needs to be right now, and I feel like I have the Lord's support in finding what therapy Sammy needs.  That's a good feeling.

  

Samantha's Doing Great

Wow.  This trip to Utah for therapy has been so much more than that!

1. Drive from California to Salt Lake City and stay with my friend for a week.  She has her baby a bit sooner than planned.
2. Come down to Provo.
3. Marcus flies into town for the weekend because Samantha is invited to be the BYU Football Team's Thursday's Hero!  Awesome
4. Since we're here, we travel a bit to try some alternative therapy for Samantha and my mom.
5. The Daily Universe (BYU's newspaper) comes to Now I Can to interview Tracey (founder) and interviews me about Samantha.
6. Buy some doTerra oils and sign up to be a consultant and seller.  If I sell some, great, but I signed up for the discount really.  We'll see how they work for Samantha.
7.  Oh yeah, and we're here for therapy.  Sheesh.  We've been so busy.

I can't believe we're already approaching the end of week 2.  I'm so glad we're here for 4 weeks.  Here are some changes in Samantha that I've noticed since being in Utah.

*  Samantha sleeps with her arms straight.  She has never done that before, but many mornings, when I pull her in bed with me, she lays flat.  Incredible actually since she is always so tight and curled up.
*  Though she is always pretty verbal (aka: loud), this wasn't a huge thing to me at first, but Sergio has said that she is more verbal with him during therapy than she's been in the past.  They "talk" back and forth more.  He said it seems more conversational.
*  The other night, she was crying.  I went in to see what was wrong.  She was saying "mommy."  I've never heard her say Mommy.  Mama, yes.  Mommy, this is a first.
* Overall, she is much calmer.  It surprises my mom and stuns Sergio!
*  She can hold a static position longer.  Before, she was unable to truly sit still in good form for more than 20 seconds.  Now, she is holding some positions for over 30.
* She is standing taller and straighter.
*  She is flat foot more often.
*  Her natural position is to have knees bent, tummy tight and tucked, slightly bent at hips, shoulders hunched, and arms bent.  Anywhere she can fold in, she will.  Those "bends" aren't as severe.
* Her hands seem noticably more open and relaxed.
*  I sat in the back of the car with her the other day.  She held my hand.  Not, Sammy-I'm-going-to-hold-your-hand-and-you'll-like-it, but she sincerely held my hand when I reached over for her.  She's never quite done it like this. 
*  Today, during her snack, at least 90% of the time, she picked up the food she wanted and got it in her mouth!  That is HUGE!  Yesterday, I was watching her struggle and I sad and frustrated for her.  Today, she was a new kid.  Here's hoping that sticks!  Nearly everything she went for, she picked up on the first try and got it in her mouth.  That's either huge progress, or starvation is a bigger motivator!

Reality Check

Being a mom isn't what I could call "easy."  And that's ok.  I kind of knew that coming into the job. 

Being a mom.  It's a tough job. 

And it gets even harder when you have to make all these decisions about therapies and treatments, surgeries and equipment. 

Today, I feel overwhelmed.  Of course I want what's best for Samantha.  Don't we all want what's best for our children?  And yet, with these little ones who struggle to move, eat, or even breathe on their own, I want so much more for her...or maybe less depending on how you look at it.  I've never had such a deep desire for every day things that we take for granted.  All those simple tasks.  Simple skills.  Simple stuff.  I want that for Sammy.  I've never dreamed about my kids being the next president or famous engineer.  But I never dreamed that I'd so deeply desire them to move "normally" or eat on their own either.   

I have felt on many occasions that there was so much potential within Samantha that just needed to be unlocked somehow.  (Maybe I'm too focused on unlocking the wrong kind of potential ~ a thought that just occurred to me and that I'll have to think about more.)  And so I research.  I read.  I search.  I ask questions.  I try to truly figure out what is best for Samantha.  I mix and match what I think is working, or will work for her.  Why?  Because I really feel like those things will help her.  Much of it is trial and error, and other times I feel divinely led.   

And in all that we do for her, I still feel discouraged and sad at times.  The past week has been hard for me.  I've had difficulty keeping my emotions in as I've watched Samantha around other kids.  In the past, I had compared her.  I don't do that so much anymore because to me, Samantha is her own little person, and all considered, I'm really ok with that. 

But during this week's time, we've played with cousins, friends, and strangers at the park.  In all the situations, I've watched with joy as Callie played and had so much fun with them, while my heart broke watching Samantha wanting to play with them but couldn't.  She kept going towards the kids, but they just pass her by.  It's ok.  I'm not saying that these kids should stop and play with her.  I get that 100%.  It just made me so sad to watch.  And it made me even more sad when she'd cry because she wasn't playing with them.  At first I didn't recognize it as that.  But as soon as I relocated her to be near the other kids, she was happy. 

Samantha has always loved people and being around others.  Aside from any other desire I have for her, my deepest desire is that others will love and want to be around her too.

Here I am, doing all these therapies for her, feeling confused about what is best...liking bits and pieces of this, all of that, parts of something else and trying to figure out how to make them all mesh together and work for Samantha...and what tugs at my heart is ultimately how it will all play out in the end.  Will all of this really help her achieve not just a more functional life, but a happy one as well.

Being Samantha's mom sometimes is not easy.  And I guess it never will be until my heart is separated from hers.  But, I'll take it.  Forever.  

  

You Make Me Proud

Samantha,

I love you so much.  And you are doing so well.  You are making it through your second full day at Now I Can and you are taking it like a champ.  Yes, you yell and cry at times.  But right after, you are so smiley and it makes everyone here so happy.  I love seeing your progress.  You are already standing taller and straighter.  Imagine what things will be like for you if you can just understand how to stand better.  Your world will be more accessible for you.  You will realize that walking correctly is actually easier...you always do try to make things more difficult than they need to be don't you?  Well, let's work on that ok?

You're a rock star.  Just thought you should know.
Love you,
Mommy

Off to Utah

I can't believe the time is here.  We've been talking about it for so long, and now it's time to go to Utah for Sammy's therapy.  Now I Can.  It seems a little surreal.  I told my sister it reminds me of having a baby.  You talk about it and talk about it and then one day you think "Woa!  I'm having a baby next week!"  Sure, I'm not going to be having a baby, but there's so much rushing around I'm doing and the final preparations...

I'm not sure what to expect.  But I expect a lot.  Not from Sammy.  Or even from Now I Can to tell you the truth.  But I do expect it to be a good experience for our family. 

I'll be posting on this and our family blog -- probably more detailed stuff on our family blog since I'm not doing so hot on keeping this one up.  In fact...I may stop doing this blog and combine it all on one blog.  Not sure yet anymore...that's for another day though.

Until then...Now I Can is what we'll be doing the next few weeks.  Wish us luck.

Right Around the Bend....



We're In...Now WE Can

Deciding to take Samantha to Now I Can in Utah came up pretty fast.  The following months have been intense and fabulous!  I've said this before, but the love that we have felt from our friends, family, and perfect strangers has been overwhelming.  In an attempt to not sound so dramatic -- I just feel like we are witnessing something great.  I feel like our family, Samantha specifically, is a part of something greater than this therapy.  Yes, I believe that this therapy is going to be fantastic.  I expect to see miracles, like, ohhhh using a spoon to feed herself, walking up stairs.  I don't know what it'll be, but I believe there will be real physical miracles that come from this therapy. 

Today, however, as I met with friends to coordinate Sweatin' for Sammy - 5K, I realized I was witnessing another kind of miracle...the kind that brings friends, families, strangers, and entire communities together.  The kind of miracle that knits people's hearts together. 

Though both kinds of miracles can be life changing, today as I sat with these selfless woman, I thought to myself that if THIS is the only miracle that comes from all of this, it may just be worth it.  But, just have it be known...I'm expecting some of those other physical things to come along too.  Am I pushing my miracle limit?  I sure hope not.

And, finally.  YES.  The purpose of this post.  Drum roll please:

After our Chevy's fundraiser, we had enough money to pay the downpayment of $700 and secure Samantha's therapy session.  She is scheduled for September 19 - October 7.  We are so ExCiTeD!!!  Wahoo!

Now I Can ... begins

Samantha, we've been told, responds well to therapy.  I'm not sure how long that will last, but she does.  She responds well to this new therapy we're doing at home, she responds well to PT and OT, she responds well to water therapy...she responds and she does it well.  Great.

So when I heard about Now I Can, I wanted to try it out, now.  while she's young.  while she's "responding well."  Echo (our PT in Spokane) recommended Sammy have some intensive therapy.  She said Sammy'd be a good candidate.  Also, intensive therapy (4-5 hours a day for a few weeks) has shown to have greater results than 1-2 hours a week (which is what we do now).

I had been putting it off, just because there were other things on my list, until the other day.  I get their monthly emails, and there was the email address to Jon.  He's the financial guy in their office.  I thought, "Why not get information?"  And, so I shot him an email.  He responded the next day (today).  He gave me his phone number and I called.

The awesome thing about this, is that he's going to call my insurance and find out if they cover anything and what and all that jazz.  My list just got way shorter.  I like when people do work for me.  It makes things easier.

So, I'll wait until I hear back from him -- probably in the next couple days -- and go from there.  I'm hoping our insurance will cover something.  That would make me happy.  But, who knows?  And if not, that's ok too.  It just means more fundraising...but I'm thinking this is worth it. 

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.

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.

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.

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!

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!

Occupational Therapy

Sammy has been adjusting well to her new therapists here. It's taken some time, but she's doing well with them. At first it was really hard for her. Both her physical therapist and occupational therapist are new. That's not always a bad thing. Hey, we all have to start somewhere. I was a new teacher once. But, being an old "new" teacher, I understand that there is a level of comfort that is definitely lacking when you commence the work. At first, it seemed like her therapists were so nervous around Sammy. That really bothered me. And it was hard because we came from Spokane, WA where we were placed with some of the best therapists in the region. We were very blessed. So, to come from that to this was a big adjustment for me. But, just like most things, if you give it time, it all turns out well. Sammy has adjusted. The therapists understand Sammy, and they actually work quite well with her. I'm impressed with someone who will ask for help, someone who recognizes that they need a second opinion...and both of our therapists at CCS (California Children Services) have people come in so they can ask questions. I'm confident in their abilities but feel even better knowing that they will seek out the advice they need.

I'm still on the search for water therapy -- not just special ed swimming lessons -- and hope that I can find one soon.