Walking

There's something very interesting, and in some ways, very admirable about Samantha.  Samantha doesn't know how to walk.  But she walks.  How?  How is that possible?

Samantha has a drive within her to be like the rest of us, to move, function, and walk just like us.  Though she doesn't know how to use her muscles properly...and her brain doesn't even trigger certain reflexes and muscles, she has figured out how to walk.  

On Tuesday, Samantha worked on walking.  Her feet have gained range...she can stand more flat on her feet.  But, when she's there, she has no idea what to do with her body.  Her balance is all based on the fact that her brain knows what to do when she is on her toes.  She moves by momentum.  So when she wants to walk, she leans forward and goes.  The idea of taking a true step...deciding to move forward and then picking up her foot and leg to make that movement forward...is just beginning to emerge.  On Tuesday, her legs were in these splints, keeping her legs straight, forcing her into position where she'd have to use certain muscles to walk.  It took her a very long time to progress across the room.  But she did it.  She did it with encouraging words, physical touch and guidance, a lot of love supporting her, and her own desire and determination.  

It's interesting.  The past week Micah has made huge progress towards walking.  In one week, he's gone from standing for small moments (seconds really) to standing confidently for minutes at a time.  His one step has turned into clusters of 3 steps at a time.  He too has the desire and determination.  To get here, he's had verbal and physical support.  Callie regularly practices walking with him...his hands in hers as she leads him around the house.  We cheer for him when he stands for longer periods of time, and clap when he walks.  He's had some of the same things Sammy has had in her progress, yet he has already surpassed her skill level.  When Micah stands, he's tall and erect.  When Micah walks, he consciously picks up his foot and places it on the ground, finds his stability, and takes another step.

Callie has walked since she was tiny.  Walking was never an issue for her.  She excels in most things physical.  She's athletic naturally.  Walking was mastered quickly and over the years, she's been able to explore her world through running, dancing, tumbling, and now swimming.  Her swimming journey has been more difficult, but with more exposure and encouragement, she's doing so well!  I love seeing her progress.  I notice during her lessons, she frequently is looking up to make sure I'm looking.  She wants the assurance that I'm aware, I'm paying attention, and I can see what she's learning.  Kids want us to be involved so we can cheer them on.

I'm not trying to compare my children.  That's not my intention.  Rather, I'm comparing circumstances in life.  It's a reminder to me...as I watch 2 of my children who are about 6 years apart, at the same developmental stage, and 1 who has always progressed quickly through gross motor stages...that we all have the desire to progress.  We all want to move forward.  It's in our nature to improve, progress, move forward, be the best version of ourselves that we can be.  But without that encouragement, support, love...our desire and determination can only get us so far.

And yes, there are those stories of people who beat the odds and when everyone said they couldn't....they did.  I believe in those stories.  They are uplifting and inspiring.  But I don't ever want to risk the potential of my child on the chance that their desire and determination alone will get them to where they want to be, or need to be.

We will keep coming and going to therapy as long as we feel Sammy needs it.  It may be challenging at times, but it's what we will do.  We will always figure it out.  We will go to our kids sports events, musical performances, and awards ceremonies.  We will sit in their rooms and chat.  We will pray for them, fast for them, study the scriptures with their individual journeys in mind.  We will send them quiet winks, blow kisses, and do whatever it necessary for them to know that we love them.  We will encourage them.  And when it's hard, and their desire and/or determination wanes, we will personally do what it takes to wax it up!  Because that is what moms and dads do...or should do.  We will be their cheerleader.  I have parents who continually cheer me on...and that's what I'll do for Sammy, Callie, Micah, and our future children.  It's an honor to do it.  

Little Maloney

I'm not sure why, but one day I started calling this little dude Micah Maloney...and it has stuck.  It's not only a proper noun, but also an adjective.  

Proper Noun:  Referring to the actual little man.   

Hello there, Maloney.

Well, if it isn't Micah Maloney.

If I could have dinner with anyone in the world, I would choose dinner with Mr. Maloney.

Adjective:  A description of someone, or something, that could be compared to Micah...the original Maloney.  Variations of Maloney are also acceptable in the adjective form.

You're so maloney.  

What a maloney!

That giggle was very maloneyesque.

In the pictures below, you will see the maloneyiest (yes, it's spelled that way) little face on the planet.  He has had a rough few days, with a fever and stuffed up nose.  It's all very sad.  He's just wanted to be held lately.  But last night, after waking up to unbreathable passage ways, he gave me small smiles and some playful moments.  I love this boy! 

Anne of Green Gables

If there was ever a question in your mind if you should take the time to read Anne of Green Gables or not, let me answer for you.  Yes.  You 100% should take the time to read this book.  It is absolutely lovely.  I understand why it's on the lists of Books Every Young Girl Should Read.  

Anne of Green Gables (1908) is a bestselling novel by Canadian author Lucy Maud Montgomery. Written as fiction for readers of all ages, the literary classic has been considered a children's novel since the mid-twentieth century. It recounts the adventures of Anne Shirley, a young orphan girl mistakenly sent to Matthew and Marilla Cuthbert, a middle-aged brother and sister who have a farm on Prince Edward Island and who had intended to adopt a boy to help them. The novel recounts how Anne makes her way with the Cuthberts, in school and within the town.

That is what Wikipedia has to say about it, but, obviously, there is so much more.  I left this book feeling so uplifted and truly happy.

When I was younger, some of my friends loved Anne of Green Gables.  I tried, but never got into it.  I think I was too immature to read something so fantastic.  I was stuck on the books that had some girl die of leukemia and made you bawl.  Why do kids like those books?  I read many of them.  I have always wanted to give Anne a second chance, but this was my time.  I laughed, even cried (I guess my young self didn't make it that far to find out that I would really cry and thus, call the book a success).  From the beginning, I was cheering for Anne and wanted everything to work out for her, but I also found giddy devilish laughter in her misfortunes...because they were funny!  And her reactions were so dramatic and priceless.

For young girls, young women, and grown-adult-sophisticated women, this book will either plant the seed or remind us of how much we can accomplish.  That we can be loving and compassionate, that we can be dreamers and perhaps flighty, but also very accomplished, smart, and driven.  We can put family and those we love joyfully first while still fulfilling our own personal dreams.  And maybe that means those dreams change along the way.  But that's ok.  In fact, that's a part of the adventure.  If you have not read it, I will not spoil it, but I will say that although the end could be perceived as sad, I was so happy.  It was so well crafted.  I felt like Anne's response to the circumstance was perfect.

Definitely a book I will read to Callie as she gets older.  Loved it.

Now, onto Anne of Avonlea.  

End of Week 2

On one hand, I can't believe that we're ending week 2 of therapy!  But truly, on the other and bigger hand, it feels like we've been here forever and the thought of 2 more weeks feels so....ohhhh....long.  This has been a much more strained trip for me, but we're still enjoying the time with Grandma, Grandpa, Uncle Bryan, and Aunt Lisi.  We're having fun seeing extended family and meeting new friends.  Callie's becoming a much more confident fish.  Micah's taking first steps.  And Sammy, well, Sammy's doing well.  There's always this nauseating rollercoaster ride I endure during therapy.  She does great, then I start to feel like she's not making any progress.  Then I'm encouraged again by something small.  And then I cry because I feel overwhelmed by her lack of improvement.  It's just the way it is for me.

 Sammy crawled right up and sat between Chuck and Ben.  I guess she just wanted to be a Roberts for the day.

 But she's also quite fond of Analisa and Alex.  She looks a little crazy here, but she really had been extremely excited and crawling around in circles and jumping around for about 45 minutes straight!  By this time, she was pooped.

 Sammy in the Monkey Cage.  She seemed to really like this.  Suspended, they work on her.  At times, she completely would relax and open up her back...even hang her head upside down to look at me.

 One of my highlights each day is taking Callie to swim lessons.  She loves them and is really improving.  I'm so proud of her.  She's conquering her fears and you can just see her beam confidence.  I love it.

 It's been so hot here, and this $11 investment has been soooo worth it.

Yesterday, however, I think I pushed my luck a little too far.  Swim diapers?  nahh  I didn't want to spend the money on them, and if I know Sammy's gone to the bathroom already, no problem.  But yesterday, oh sweet yesterday, Sammy bent over and I saw a bulge that screamed, "All children, evacuate the pool."  That was the end of that for the day.

 Is there ever an inappropriate time for an Otter Pop?  I think not.

 He didn't take a step here, but I assure you, it's happened 2 times.  And so far, he will stand for many, but will only take steps to Mommy.  As far as I'm concerned, that's how it should be, right?

 Friday morning, about to get ready for therapy.  These kidlets are waking up all too early considering they are going to bed later.  I hope Marcus is ready for a couple early mornings when we get back home.  I'm going to need a break!  And it'll be an hour earlier.  I'm not a fan of 5am mornings.  

 This little girl.  She brings me so much joy.  I mean, who really wants to have their legs strapped in like that?  But she smiles.  I want to be more like this little gem.

 Patiently waiting to get all strapped in....

and here we go.  Get that spider.  She doesn't love having her arms worked on, but such is life, right?

With the weekend ahead, I have a lot on my mind.  Mostly, I'm exhausted.  Seriously so tired am I.  I feel like I can't even function too well.  Yesterday, during therapy I slept a little bit, then I took a 2.5 hour nap when we got home.  I only woke up because Micah cried.  I could have stayed asleep for a very long time!

I look forward to week 3 and hope to see some more improvements.  I think they will come.  I pray they will come.  I believe they will come.  But it's 1 small step at a time.

Relearning to Walk

Samantha's made some great progress.  And I'm so happy about that.  But it seems like the progress all happened right away, and now comes the struggle.

Her feet are down more during therapy.  This is fantastic news.  We had thought that she lost all range in her feet/ankle, but that is clearly not the case.  She stands flat and for quite some time, as she works.  What I am noticing, though, is she doesn't stand flat footed at home at all.  hm  I'd really like to see that.

The other really noticeable thing is that she struggles walking ~ more so than she did before.  I was talking to Mark and he mentioned that I may see this...and it's true, I have.  She has gotten her feet down, but she has no idea what to do now that her feet are flat.  She is in such a pattern of walking high and then higher up on her toes, she doesn't know how to properly walk.  So, they are spending a lot of time helping her feel her feet...feel the ground under her feet...and then use the correct muscles to actually walk.

Today is one of those days I wish it were all easy.

As a side note: I'm super tired!  I can't seem to sleep enough.  So, I'm going to take a little nap while she's in the spider cage and hopefully that will revive me a little bit.

What We're Doing

Why: Intensive Physical Therapy for Samantha at Now I Can

Where: Provo, Utah

When: Now

What:  Well, aside from physical therapy, here's a little bit more of what we're doing....

giggling while we eat

playing on and around the couch

falling asleep while watching movies on the computer

chewing on straws

climbing trees

doing hair

(Callie said she put this band around Sammy so she'd be ready for her 1/2 marathon.  Just for the record, it's a ponytail holder and Sammy did NOT run a 1/2 marathon.)

swimming

Let us not forget meeting new  neighbors, playing with new neighbors, roasting marshmallows, playing with Grandma and Grandpa, going to the Pioneer Day Parade in Spanish Fork, and having a good time all around...or at least as much as we can without Daddy around.

Happy Hoop

Someone is REALLY happy today working in the spider cage with this hoop they rigged up for her.  Work?  Who says intensive therapy is any work?  From the sounds coming from Sammy today, you'd think she was on a very expensive, exclusive vacation!  Squeals of delight.  Giggles.  Babbles.  Thank you Happy Hoop.  I'll be looking forward to working with you again soon.

No Woes on Wednesday!!!

(Pictures aren't uploading.  Give it time.  They will come.)


Can I just say....

I'm so happy.

I was so dreading this trip, for a lot of reasons.  But as soon as I walked through the door of Now I Can Monday morning, I felt this flood of peace.  That only got stronger, and turned to excitement, when Mark started to work with Samantha and begin her initial evaluation.  I don't know Mark.  I knew there was a new physical therapist, and I was just nervous.  But Mark worked with Sammy comfortably and with ease, and she warmed up to him immediately.  I was so happy.

Tuesday and Wednesday I missed out on therapy.  I dropped her off and wasn't able to return until it was time to pick her up.  Tuesday I headed to the airport to pick up my parents, Wednesday I was sick.  (Feeling better after some good solid sleep)

Wednesday.  What a great day.  She fussed.  She cried.  At time, the crazy girl screamed out in frustration.  But already, on day 3, I'm seeing changes.

* When lying on her side, she normally curls up in fetal position.  She's already starting to elongate her body and rest on her elbow.

* Feet.  Big problem and one of our biggest concerns.  She is beginning to stand flat foot.  Walk flat foot?  Not yet.  But stand?  Beginning to.

* Tuesday, when Nichole worked with her, she couldn't get any response to some muscle activation.  Today, response.  So, her feet.  Dorsal flexion.  She's always on tippy toes and pointed with a prima ballerina.  Nichole tried to stimulate a response, her toes didn't even budge.  Nichole said it was like Sammy's brain had no idea what to do...that they could even move her toes.  Day 3, she's starting to wiggle them.

* Tuesday: Sammy needs a forceful amount of cueing to open up her rib cage...and even still, she wouldn't do it.  Wednesday: With a moderate cue, Sammy is starting to pull her shoulders back and open her rib cage.

* I'm noticing just after a few days of this session, when she's having her snack in the stander, she isn't as hunched over.  She is standing up straighter and her shoulders are more relaxed.

I talked to Nichole for awhile about Sammy, what it is we want to work on, what my concerns are, what's going on with Sammy's body.  This is what I learned:

* It's not Sammy's Achilles tendon or even her calves.  It's her dang hamstrings that are so tight.  Her her glutes.  Those 2 muscles are dominating her body -- or at least lower body.  They are always tight.  When she's laying on her back, her knees pop up and her toes are pointed...it's because of those hammy's and glutes.  We're working on that.

The thing that really made me (thrilled, ecstatic, over the moon) happy was when Nichole said that because she's already doing so well, it shows that those neural pathways are still there.  The seizures haven't "destroyed" the pathways.  Maybe those pathways became dormant, but she's pretty quickly relearning those things she once could do.  Yeah!

I can tell Samantha's much more comfortable with the movements.  Sore?  Yep.  We can tell her muscles are sore.  But she'll get a nice warm bath today before she goes to bed and she'll sleep well before we hit it again tomorrow.  I'm so proud of her and I just keep getting confirmation after another that we are where we need to be.

Bad Attitude Update

I feel like I need to quickly follow up on the last post.  Because not only did I sound like a horrible drag, but things have since changed, and I feel like it's important that positive, happy vibes re-enter this dear little Green Piece.  I make no promises that negativity won't creep in again some time.

That dark day when I sat in front of the computer, sitting on the kitchen floor, typing and crying...I pulled it together enough for Callie.  I mean, I have kids to take care of.  Later, who I visit teach came over.  Yes, she popped in and as we sat down and chatted for a moment, I lost it.  I let it all pour out.  We talked for a few minutes.  She didn't say much, just listened.  We moved on to other conversation, and by the time she left, I was feeling lighter.

By the end of the day, I was feeling a little glum, but a lot better.

The next day, Sammy had an appointment with Dr. Mandac, her PT Catherine, and the PT supervisor, Daryl.  We have this team appointment every day.  We talked botox injections in her calves.  We talked serial casting (putting casts on her legs weeks at a time to slowly stretch her out), and we came up with nothing for sure.  We decided to wait after we finish our therapy at Now I Can and see what we should do.

During the meeting, I mentioned therapies I was interested in trying.  I was told, very kindly actually, not to spend too much time and money, at least not quite yet, because she just may not have the potential for it.  I knew I was feeling a lot better when this didn't phase me.  I knew I was back to Jenny-normal when I thought, "Yeah, ok.  We'll just see about her po-tential.  psh"  I wasn't hurt by the comment at all.  And, in fact, I knew they were trying to be kind and gentle with how they worded it.

So, I'm good.  I don't know what her future will be.  And when I say future, I'm talking a month from now even.  And that's ok.  And ya know, say she is restricted to a wheelchair.  Bummer.  Huge bummer, and I'll be sad about it, because I think that's normal to feel.  But there are far worse things.

I really put a lot of stock in my faith.  I rely on it and depend on it...and I think sometimes I even take it for granted.  This life is temporary and fleeting.  And even though she's been in more pain and discomfort lately, and that REALLY bothers me, overall she is happy and so loved...and she knows it.  I know that part of how I am Judged will be how well I endured.  That doesn't mean I can't experience pain, despair, sadness, anger.  It means, in those moments, I need to turn to Truth to find peace and joy again.  My family deserves that.  I deserve that!  It's a choice...and some would argue it's an easier choice for me than for someone who is more naturally pessimistic.  I agree with that.  But it's still a choice.  And there are seasons during this journey when every single day, I'm actively choosing to be happy and not let her circumstances cloud my attitude.  Samantha makes that easier for me to do.  She truly is my sunshine.    

So here's to you Sammy Samsquatch.  No matter what comes up, we'll be right with you the entire way.  I love you.  So much.

Warning: Bad Attitude Ahead

Towards the end of last week, I began feeling stressed.  I'm not feeling ready for this trip to Utah.  At all.  I don't want to go.  I'm struggling with feeling that way and also knowing, or think I'm knowing, that this will be good for Samantha.

Over the past few days, I've spent about $400 on the car getting it ready to make the voyage...Utah-bound. Samantha's been struggling with sleep.  And, more than that.  She hasn't quite been her self.  Her teacher called me yesterday.  Apparently Sammy was fine in the morning, but wouldn't eat lunch, and wouldn't stand.  They couldn't even get her to stand up.  She seemed ok at home.  She has been fussier than normal, but I look at her body and think...she just must be so uncomfortable.  She is so tight.  All curled up, more than ever.  Her feet hurt to have her braces on because her tone has increased so much.  I get a few hours a day in her braces but then we have to take them off, or they have to at school.  She has pressure marks from her braces, and that's not good.  

Today at physical therapy, her PT said she didn't really know what more to do to help her.  All the options that they have aren't a good fit for Sammy.  Botox is an option, but they don't think it's a good one for her for many reasons.  Her PT then decided to measure her legs.  She measured the left one longer than the right.  That could be an issue, for sure.  People's bodies can compensate for small differences in leg length, but Sammy's can't.  Instead, she curls up more and goes further up on her toes.

When I dropped Sammy off at school, she clearly wasn't happy about walking in.  Her teacher came out and we talked for a few moments.  Then she said, "I don't want her to lose her ability to walk.  I'm really worried about that because, well, it just is looking like that."  Crush.  I was crushed.  I've known for a long time now that Sammy's body is changing and getting worse.  But to hear her say that put into words what my fear should be.  I never thought of her losing her ability to walk, but that is exactly what we're fighting against.    Many kids like her are in wheelchairs, all day.  I just never imagined she'd be there.  Am I really in the process of watching my daughter deteriorate?  Do I sound a little dramatic?  Maybe.  But it doesn't feel that way.

So, we're heading to therapy this weekend.  And I'm going to, obviously, tell them my concerns for this session.  But I have so many questions that can't be answered right now.

Do I try to do this therapy again in 6 months instead of waiting a year?  If we do, how do we possibly afford that?  And can I really pull the kids out of school for a month?  Sammy's school really doesn't like it for a lot of reasons.  How do I take 3 kids alone?  My parents will be there this time, but they can't fly out again.  So do I go to the place in Michigan instead?  But that's WAY more expensive.  What can I do that's local, more consistently, that I can really commit to doing?  I can't find a program that will really work for her.  Do I just pay for traditional private physical therapy?  

My thoughts are going all over the place, really, and I'm so emotional about it all.

I'm usually grateful, sincerely, for Samantha and don't feel angry about her earthly condition.  But, in this very moment, I'm so overwhelmed.  I hate money.  I hate cerebral palsy.  I hate that I can't just figure it out for her and get what she needs.  I hate that my 7 year old is nothing like other 7 year olds I know.  I hate seizures too, by the way...and the bucket load of medication she has to take.  I hate feeling sad.  I hate allowing bad, unproductive thoughts to overpower my day and interfere with my life.  I hate that, so honestly, it rarely happens.  But, this is real, and I hate that it's real.  I hate that I can't take Callie to the park today with her friends simply because I can't pull it together.  And it just all feels so...miserable.  Not unfair.  It doesn't feel unfair to me...just miserable.  

And I don't like miserable.

I have a lot of things left to do today, including having some people over for dinner...so I better buck up.  And then maybe I can cry again at 7:30pm.  Yeah.  That'll be my plan for today.

And I'm ok with that for now, I guess.  

Success!!!

See this super cheese grin?  This little dude was pretty proud of himself after pushing the chair over, climbing up on top of it, and sitting down.  Yep.  Pure cheese.  If that's what he looks like on the outside, imagine what it's like on the inside?  He's REALLY excited! :)

Turn to the Markers

Marcus just returned from a week-long camping trip.  He was anticipating the trip for quite some time.  He and 4 other men and about 12 other boys headed out to the wilderness, hiking over granite rocks and through rivers and trees.  They lived off of whatever it was they brought in their packs.  Marcus was prepared and ready to go.

He got home late Saturday afternoon.  We talked a little about his trip, about my week with the kids...we just caught up.  Sunday morning on the way to church, he was talking about the trail.  Sometimes it's difficult to know when you're on it.  I've been to Young Women Camp a few years and where Marcus was is in the same general vicinity.  I'm familiar with hiking over granite.  Sometimes, it is hard to know if you're "on the trail" because you're just walking over rocks.  But it was when Marcus said, "You don't always know if you're on the trail, but....you know when you're off.  Ya know?"

That really hit me.  And I told him that there were several gospel analogies in that one phrase.

What hit me was this:

It's true.  Sometimes we don't always know if we're on the right path.  We just keep going, on faith, hoping to see the little stone markers that will guide us and confirm that, ok...we're going in the right direction.  And we rely on those markers.  But, if we understand hiking a little bit, if we get off the trail, we'll recognize that there aren't markers anymore...the rocks are more difficult to climb and a bit crumbled.  It'll feel a little like you're off-roading...we'll feel lost and will want to turn around and find our way back because we know there are bears and rattlesnakes out there, and we want to get to where we need to go.  

It's true.  Sometimes we don't always know if we're on the right path.  We just keep going, on faith, hoping to feel the Spirit that will guide and confirm in our hearts that, yes, we're going in the right direction.  There are markers to help us know if we are, in fact, feeling the Spirit.  Peace is one of those.  Comfort.  Happiness.  Joy.  Love.  Some people feel warmth in their hearts or throughout their body.  We may hear something someone says and feel the Spirit.  When we understand the markers, we rely on them.  We cling to our faith.  We listen to the prophets and apostles, and we obey.  We read the scriptures and feel our relationship with the Savior get stronger.  We prayer and feel we are truly speaking to our Heavenly Father.  But sometimes, sometimes those things become a part of our daily life.  We don't feel like we're getting these overwhelming reminders that what we're doing is right.  It's become so much a part of our life, that we don't feel these huge reminders.  But...but when we get off the path and start turning away, if we have been trying to stay close to the Spirit, then we will recognize the feeling of not being on the path.  We will feel uncomfortable and we will receive little promptings to let us know that we need to back track.  And we can.  


I could go on and on with this.  But it really touched me, maybe because I need to backtrack a little bit myself.  I keep finding new connections to that one little sentence he said.  But I've decided, that if I always look for and turn towards the trail markers, I'll be safe.  I may still need to make improvements, and that's ok as long as I'm on track...and then I can make the adjustments I'll need to along the way.  Turn to the markers.  Ok, I will.