Puget Sound ESD Parent Page Website and leg update

I was asked to forward the following information out into the world that is Team Bean, particularly those of you interested in how the brain learns.

Speakers and staff  from the How Do I Learn project will post short “translational” articles about learning-focused “Neuroscience in the News” on the Puget Sound ESD’s “Parent Page” website. These monthly articles will focus on research topics that are of interest to these groups – such as the importance of sleep for learning, the effects of stress on learning, the effects of exercise or nutrition on learning, the myth about needing only one place to study (Carey, 2010), or new insights into memory and learning. 

 "How do I learn: How Neuroscience Informs Learning

The Parent Page will include reviews/discussions/comments about recommended or currently popular books such as How People Learn (2000), Brain Rules (2011), Talent Code (2009) or Moonwalking with Einstein: The Art and Science of Remembering Everything. (2011) or Why Don’t Students Like School? (2009).

In the coming months, this team would like to do an article on Hemispherectomies!  AWESOME! 

Feel free to forward this website on to anyone you know who would benefit from it.

Thanks!

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Also, for those of you who are not on facebook and are curious about how Jayna is getting along after her fall, she is doing much much better!  She is still unable to take steps, hills or uneven surfaces (grass, gravel etc.) without assistance, but her limp is not as pronounced and she is moving much faster.

Also, she is still whizzing around on her trike like nothing happened at all!  Her PT says the low impact exercise will help in healing.  The other day she told me, while riding her trike, "Mama! This is better than walking!"

So, my guess is that she had soft tissue damage after the fall and was protecting the area that hurt by limping and walking slowly.  I will be happy to see her zooming around the halls of her school again soon.

Two Steps Back

Last week Jayna fell.  She missed a step down on our deck.  I was there to catch her before she hit the ground, but something happened to her leg.  She couldn't walk or bear weight.  After a round of X-rays at the ER, and another set the following day at the pediatricians office, we found no reason for her inability to walk.  There are no broken bones, no fractures, no bruising, no obvious swelling.  We even repeated X-rays yesterday...still...nothing.

After five days of wearing a splint and riding around in a wheel chair, I sent Jayna to school to walk on her own.  She walked very slowly and needed a hand to hold.  Also her gate has changed drastically.  She turns her left foot sideways and her limp is much more pronounced than it has ever been.  She cannot walk on uneven surfaces or hills.  She can not take steps without holding onto something.


She tells me her foot hurts when she walks, but she doesn't complain about it or mention it without prompting.  I don't know if I am overreacting or not fighting hard enough to find out what is wrong.

Years ago, Jayna had a fall like this and she didn't walk for two weeks.  I knew instinctively that nothing was broken, that she had just lost confidence.  This feels different. 

I feel like Jayna has lost years of gross motor skill development. I'm absolutely devastated.  Just an hour before she fell, Jayna was riding her trike with reckless abandon.  She has now lost all confidence and balance.  I'm scared I'm missing something. I can feel the fear, the anger, the resentment welling up inside me.  It isn't fair that Jayna can't trip like a typical kid and just shake it off and go about her day.  It isn't fair that one minute she can be walking all over the neighborhood without me next to her, and now she needs my hand again.  Its like going back in time.  I swear it feels like it is always "something".  We can't just have a normal week.  A good week.  A week without injury or struggle.  A week without fighting for every calorie, or losing patience over school work.  A week without worry.

I am seriously tired of the endless struggle.

I'm posting two videos below.  One of Jayna riding her trike, and one of her trying to walk.  Tell me what you think. (And let me know if the videos don't work).

Team Bean in the Lead!

We are coming down to the wire and Team Bean is currently neck and neck for first place!  I'm so thrilled!  We have families supporting us from Washington (of course), Oregon, Ohio, Texas, Virginia, North Carolina and Australia!  The support so far has been tremendous and I would like to thank all of our village who have registered!




It's not too late, but Monday, April 15th is the cutoff for getting a T-shirt.


If you haven't already, but would like to register: follow directions from the Hemispherectomy Foundation home page.  Make sure to chose "virtual running" and then "Team Bean".

The race and birthday celebration will be help May 18th, 9:30am at Celebration Park in Federal Way.  We hope you can join us in person or in spirit!

Love love love

"Let go, mama"

Swim lessons take place in a salt water pool 10 minutes from our house.  Jayna and I sit in our bathing suits watching Ryen swim the length of the pool.  Jayna leans into my shoulder and puts her hand on mine.

"Is it my turn yet?" she asks.

"No, my love" I say.  "When Ryen's lesson is over, the pool will be open to everyone.  Then we can go in."

We watch for a few more minutes.  "It's almost my turn" Jayna says to herself.

Dripping wet and grinning widely, Ryen stands by us as we wait for the signal that we can get in the water for open swim.  As soon as she gets the go ahead she jumps back in.  Jayna carefully walks to the edge and I help her sit down.  The water is cool, but not uncomfortable.  I jump in.  "I want you to hold me while I kick" says Jayna.  I reach for her and guide her in the water.  She is all smiles.  The life vest gives her confidence.  She lets go of me.  She splashes and moves and plays.

Toward the end of our time in the water, I tell Jayna that I'm going to take off her life vest so that she can feel what it is like when her body doesn't float on its own.  "Okay!" she exclaims.

I prop her on the edge of the pool and take off the life vest.  I pull her skinny body back into the water with me.

"Okay mama, let go."

And before I can think too much about it, I let her go.  She sinks.  Her head is under water and she breaths out a few bubbles.  I pull her back up.  I expect her to cry.  I expect her to ask to be "all done".  I expect her to scream.  To cough. To choke on the water in her mouth.  She has never put her head under water and liked it.  What I don't expect, is the smile on her face.

But there it is.  A big smile followed by a delightful laugh.  And then..."Mama, let go again".  And so, I do.

And again I save her.

She suddenly, and without known cause, has no fear, no anxiety about being under the water.  Like many things in Jayna's life and her development, I don't understand why.

Jayna ran the other day.  If you've met Jayna, you know that her "run" is a fast walk.  She always has one foot on the ground.  But, for a few steps (just a few) her gait changed and there was a split second that her feet were both off the ground at the same time.  It was just a week ago I told a friend that I had no hope of her ever running.

Jayna has a new trike.  When we first put it together two months ago, she was frightened to even sit on it.  This week she got on with enthusiasm and you could see the happiness on her face as she steered on her own.

My Jayna is changing.  This week is the kind of week that reminds me how lucky I am to have a front row seat in Jayna's life.  How lucky am I to hear the words "Let go, mama!" and then bring her head to the surface so that I can hear them again.




((Thank you to Scott Haydon Photography for the pictures shown here))

Heavier Than Air

Before Jaime and I were even married, I remember driving along the Maple Valley Highway talking about community theater.  I told Jaime how I thought it would be the perfect activity for our future family to participate in.  (I acted in plays in high school, and Jaime likes to create and build things.)  Jayna's birth changed many of our future plans, community theater being one of them.

I had envisioned my children and I on stage together, with Jaime working behind the scenes.  Instead, Ryen and I have been on stage together, and Jaime and Jayna have been our loudest cheerleaders from the audience.  It wasn't what I had imagined, but it has been a fine compromise.

Ryen and I absolutely adore being a part of the Heavier Than Air theater family.  We've met a whole new community of really talented, friendly people.  We both have a positive outlet for our "dramatic" side (that girl comes by her personality traits honestly, doesn't she?) And for the first two shows, theater was a bit of an escape for me.  No one there knew about Jayna.  Play rehearsal was just time for Ryen and I.

Facebook changed that.  Now, many of my friends from theater have read this blog, and if they have not approached me directly to ask questions, they at least have a glimpse of Jayna's challenges, and a vague understanding of our life with them.  In retrospect, I totally prefer that our theater life be completely integrated with our "real" life.  (Read this post written almost exactly a year ago The Sun is Broken and you'll understand why.)

Truthfully, Jayna is more than just an audience member.  She memorizes lines and songs.  She watches our plays time and time again with unrelenting enthusiasm.  She loves the theater as much, if not more, than Ryen and I do.

Want proof?  The following are two videos.  One of Jayna running my lines from the Wizard of Oz and one of the girls singing the "Jitterbug" from the original score of the same movie.  Jayna has probably heard that song twice in rehearsal, but has still managed to pick up all the lyrics.

So, last summer the director of the primary summer camp at Heavier Than Air asked Jayna if she would like to be a part of summer camp the following year. Not yet feeling comfortable sharing Jayna's history with our theater world, I dodged the question. But she continued to bring it up.  Then, a few weeks ago, she invited Jayna, Ryen and I to participate in an community night at an elementary school close to the theater.  We played theater games with the kids and promoted the theater.  I watched Jayna closely.  She participated as best she could.  Some of the motor planning was difficult, but she listened to the directions and attempted everything that the rest of the kids were doing.  When the kids were moving around in a small space, she moved herself to the outside of the circle so that she was less likely to be bumped or knocked over.  Seeing her in that environment gave me comfort and courage.  Maybe she could do theater camp.

So, I sat down with the director.  I didn't explain the surgery, but did describe some of Jayna's limitations:  motor planning, visually blind in her left field, cognitively impaired, still needing help using the toilet, eating etc.  I thought this might throw her off.  But it didn't.  She told me that children with all kinds of limitations have participated in theater camp.  She felt it was good for both the children with special needs, and those that were typical.  She thought theater camp would give Jayna a sense of independence and said she would work around her physical issues on stage.

I hugged her and swallowed my tears.  Jayna...in summer camp.  Not even a camp for kids with special needs...just a regular old camp that happens to be staffed with people who are flexible, compassionate and believe in INCLUSION. 

If you are looking for a camp for YOUR kids this summer, I highly suggest you check out Heavier Than Air.  The camp runs from the last week in June through the end of July at Green River Community College in Auburn.  Participation in camp is your ticket to the Seasonal Shows!

If you'd rather watch theater than participate in it, then make sure to check out the Wizard of Oz showing March 22, 23, 29 and 30th.  Ryen and I will both be dressed as men (AWESOME), and you'll find Jayna, faithfully in the audience, saying all the lines under her breath, and singing all the songs with the cast.

Great Wolf Lodge

I gave my yearly speech at the UW nursing school this week.  While reviewing my notes from last year and pondering the changes Jayna has made in a years time, I became a bit disheartened.  It seemed like the only milestone Jayna met was getting that (damn) G-Tube out.  A major, life altering event, mind you, but physically she has made no great gains.  She failed our "Gen Ed" trial.  The few changes have been subtle.

But this weekend's events have lightened my heart.

Jayna has never been a fan of water.  She doesn't like washing her hair, she doesn't enjoy pools, and showers bring on hives, tears, and the occasion scream.  This has been a sensory issue since infancy.

Recently, we stayed overnight in Bellingham at a hotel with a pool.    Ryen and Jayna talked about it for a whole week prior to going.  Every day, Jayna would ask if today was the day she could wear her "baby suit" (an adorable term for "bathing suit" that she stole from her friend, Noah).  The mental preparation and the pool temperature (which felt like bath water) was all it took for Jayna to get in the water with a smile.  She practiced kicking and moving her arms. We played with a big ball.   I couldn't believe it.  Without therapy, without coaxing, she was in the water and enjoying it.

The next weekend, the girls were invited to a birthday party at our community pool.  Ryen took Jayna out in the water herself.  She held Jayna and walked her through the water.  They both looked so happy.  Ryen even got Jayna to play in shooting water by encouraging her to put her hand into it.  Jayna's squeals were excited, instead of forced, as she often sounds when she is scared. I looked at Ryen and said "maybe she is ready for Great Wolf Lodge".


If you don't have a Great Wolf Lodge near you, let me fill you in.  It is a gigantic indoor water park with attached hotel and other fun things for kids to do (like quests with wands that actually interact with the surroundings).  Ryen and I went with my sister (in law) and nephew last year for Ryen's birthday.  We had a fantastic time.  It has been a pipe dream of mine to go there as a family ever since.

We took a leap of faith and booked one night.  Jayna again, was excited about getting into her baby suit and going swimming.  I put her in a life vest and into the water we went.  She had a blast!  One pool in particular was perfect for her.  It wasn't too crowded and it was deep enough that her toes couldn't touch.  There were balls aplenty to throw and catch.  She got comfortable floating by herself.

As usual, there was a bit of "divide and conquering".  Jaime went on a few slides with Ryen while Jayna and I played in the pool.  Then we switched.  Ryen and I went on what we call the "rock and roll slide".  You can ride with up to four people, there is music and neon lights.  It was the first one we rode together and as soon as we got off, we looked at each other and said "Jayna could do that one!"

And she did.  Twice.

Jayna has a ways to go before she will fully enjoy the park, particularly the areas with the spraying water and the slides,  but to see her in the water, to hear her say "I don't want to get out" was worth every penny we spent.  I imagine when we go again, and we WILL go again, she will be ready to try new things.

Next time I look back on Jayna's progress, this weekend will stand out in my mind.  Not only was it a huge milestone in Jayna's life, but we have found a new vacation spot that works for everyone in our family.  Unlike Disneyland (where Jayna was miserable and puking) and Leavenworth (Read the "Carrying Jayna" post), Great Wolf Lodge was a memorable and FUN experience for all of us.  Honestly, I can't wait to go back, and either can the girls!

Growing up

It is official.  She is no longer my baby.  The space in her top row of teeth proves it.  I am not ready for this.