Spinal Muscular Atrophy (SMA) Type 2...

Ella Sabine Casten (14 month old)

Ella has Spinal Muscular Atrophy (SMA) Type 2.

The diagnosis was confirmed on August 12, 2011.

Her motor neurons are dying and will continue to die.

For Ella, her SMN1 gene (located on chromosome #5) is not producing a protein called Survival of Motor Neuron (SMN).  This protein is responsible for keeping the motor neurons alive.  She produces some (through copies of the SMN1 gene that mother nature has so brilliantly provided), but her copies are not sufficient to do the job as well as the original would have.  Her physical growth and the demands placed upon her muscles will far outweigh what she can produce.

As increased nerve denervation (loss of nerve supply) occurs, she will grow weaker over time and her muscles will atrophy from non-use.  This rare genetic disease is in the same family of diseases as ALS (Lou Gehrig's Disease); only it is not as aggressive.

Currently her legs and trunk are the most severely affected.  Other muscles in her body will be affected over time.  This is a progressive, degenerative disease.  Currently there is no cure.  Prognosis is unknown and varies widely for children diagnosed with SMA type 2. 

What do we do now?

One thing we do know:  Her respiratory system must remain healthy and strong; this is vital to her survival.  Keeping her intercostal (rib) muscles strong to cough hard enough to expel any congestion is the key to preventing infection from setting in.

Our minds are filled with what we are to do.  And those things will happen.  The family education, the orthotics, the doctor appointments, the adaptive equipment, the modifications to home, car, life, the insurance, the medical bills, the support groups, and so much more.  Those things will happen.

I guess the question that really needs to be asked and answered is not "what will we do?" but rather, "What will we BE?"

It is in the "being" that we will produce the highest quality of life for our family.

It is in the "being" that we will find out who we truly are.

It is in the "being" that we will find the strength to do the things we need to do.

Our choices seem endless.  There are so many ways to "be" in relation to all of this.   The spectrum of emotions can be overwhelming at times; the expression of these emotions equally so.

There is one choice, however, that really exists.... 

...it is the only choice we really have...

...it is to love her.

Ella is going to need much in her lifetime.  She is going to need a lot of help to find her way to the path of greatest independence.  She is going to need much in order to survive as long as she can.  

What she'll need above all and what we can offer her in abundance is love.

We can do that...

 We have started a new blog titled, "Ella's Corner" that will follow her as she lives with SMA.  

Ella's Corner blog address:
http://ellas-corner.blogspot.com

My Life is Full...

This is one of my favorite pictures of me and Lindsay. 

I remember when we took this picture.  I love how we are hanging on to each other.  

I love my wife.

On August 11, 2011 we will have been married for 5 years.  As I reflect on what has happened over the course of the past five years, I can see why a picture like the one above is so comforting to me.

Lindsay has been my absolute best friend.  She has walked the past five years with me with incredible love offered daily.

Our wedding was picture perfect.  We loved the entire day from start to finish.  Lindsay carried herself with grace and dignity; with love and joy.  We were ecstatic from the moment we woke to the moment we fell asleep.  We wasted no time starting a family...no time at all!

The birth of Ava was incredible...our first child.  Raising Ava has been one pleasure after another...and we are eager to experience more of the same as her future unfolds.  She brings joy and laughter to our days.

Our boy Henry coming into the world proved just as amazing.  We had a girl and now we had a boy!  The bond that Henry has formed with us has drawn us so very close to him.  He keeps us close to him and enters our hearts daily.

The arrival of Ella completed our family.  The sense of fulfillment, completeness, and joy felt by us when we first held her let us know that our family was here.  Each moment spent with Ella fills us with love and adoration.  She draws us close to her and to each other.

Through the birth of our children Lindsay has shown me that life is more precious than I ever imagined.  The strength she has is inspirational.  Not only did she carry our three children and bring them into this world, she has carried me when I needed it most.

We witnessed our 3 children coming into this world in a matter of 4 years.  In those same four years we have watched 4 close people leave this world;  Tessa Casten, Henry Gibson, Sabine Casten, & Julia Koclanes (Casten).  

Through those losses Lindsay has stood strong with me.  Holding me when I felt weak, crying with me when overwhelmed, laughing with me over memories, keeping me in reality as I ventured away from it seeking answers.  She shared her thoughts, her emotions, and her fears with me. All the while she took impeccable care of our  family.

Lindsay is a beautiful person.  Her love of life, and for the people who make up our lives, holds true forever.  

I suppose I could write a book about what we have experienced over the past five years...for now though, I leave you with a poem that I offer to my wife on our 5th wedding anniversary.

My Life is Full

When wrapped around me your arms become;

my life is full.

When smiles from you reach my eyes;

my life is full.

When thoughts about you fill my head;

my life is full

My life is full

with you so close.

My life is full

since we first met.

My life is full

each day we wake.

My life is full

with each laugh & tear we make.

Through times of joy;

my life is full.

Through endless nights;

my life is full.

Through times of despair;

my life is full.

Through all we face;

my life is full.

My life is full

for you are in it.

My life is full

for you have become it.

My life is full

for we are one.

I cannot say,

nor write or sing;

I cannot show you anything.

I cannot tell or recite to you;

How full my life is because of you.

Take these words,

to fill your heart;

Take these words,

to fill your soul;

Take these words as they are true;

Take these words: 

I Love You~

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HMC's Emotions...

Our boy.

Henry Michael Casten.

Born: October 20, 2008

Lindsay's blood pressure was extremely high two days before his due date.  For several weeks it had been creeping up.  It brought with it much emotion.

When the doctor took a second blood pressure reading on Lindsay that day she immediately sent us over to the hospital to have Henry born via c-section.  The risks associated with high blood pressure and pregnancy demand quick action.  Emotions were high that day.

Henry has continued on his road of emotions.  He is a "spirited" boy and find the highest highs and lowest lows in his life.  He expresses them equally as high and low.  

The picture above is one of extreme excitement, pride and overall good feelings.  

We love our Henry.

Henry was with Ella this morning while she had her first Early Intervention Physical Therapy session. He knew the therapist was here for Ella and he retreated to his room, feeling a bit sad and perhaps , left out.  He gathered his "Taggie" (small blanket surrounded by tags) and his "paci" (Pacifier) and sat on the stairs, looking meekly out through the spindles as we chatted on the floor below with Lynda (PT) about Ella.

I saw him and motioned him down.  He returned his paci to its place of rest (his dresser drawer) and he came down and joined us.  Ava awaoke from her slumber and joined us as well.

They played with the toys Lynda had out for Ella and behaved beautifully.  Until...

Until they no longer felt they were getting the attention they wanted.   I pulled him and Ava aside, not knowing if a two-and-a-half year old would understand what I was about to tell him, hoping the four-year old would.

I pulled them aside and told them that Lynda was here to help Ella learn how to move, to learn how to stand, and to learn how to use her arms and legs.  His big brown eyes fixed on mine and he nodded his head.  Ava took it all in like a sponge.  I went on to tell them that she will be here every Tuesday and that they could help her to help Ella.  He smiled. Ava nodded. I was on a roll.  I told them that they could play with Lynda's toys but they had to ask and only play with one.  His little raspy voice said, "ok."; Ava followed suit.

They understood. 

He understood.  

He understood that his little sister needed help.  He understood that he could be a part of that. He understood.

What he didn't understand was that his parents were flooded with emotions.  Sitting and talking with Lynda was good.  She provided hope and assurance.  At the same time, our conversation was one of stark reality.  Ella needs help.  We've known that.  The route of our coversation took us into discussions about orthotics, adaptive equipment, wheelchairs, and home modifications.  

We don't even have a confirmed SMA diagnosis yet! 

She needs help from us.  She needs help from her brother and sister.  She needs help from the professionals.  

Lindsay and I, Henry and Ava, and Ella~~we will do whatever it takes to bring the best quality of life for all of us.  

Henry's emotion will be a vital player in that help~~I know he will fight for both of his sisters~to protect them, guard them, and be there for them for their entire lives.

I saw that in his eyes today. 

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Play Hard...Work Hard...

 

Kids are amazing.

They come to us, invite us into their lives, bring smiles to our faces, create memories that last forever, and do it with unconditional love.

I've had the pleasure and good fortune, being a teacher, to be able to spend the summers with my family.  Each summer has been quite different...holding moments unique to its time.

This summer has shown me a side of life, of myself, that I have never met before.  To be quite honest with you, I am still approaching this side with anxiety, caution, and wonderment.

I am anxious because I want to know what our future holds.

I am cautious because I don't want to know what our future holds.

I am in wonderment because whatever the future does hold, I will be there with my family.

Ava and Henry played hard today.

They jumped on the mini-tramp (next to a couch) in the basement and after three short jumps they would launch themselves over the couch arm, landing on the couch itself in a sea of soft cushions.  They would then roll or jump off onto a cushion lying on the floor and race to do it all over again.

After lunch they practiced riding their bikes.  Our neighborhood has slight grades creating slight hills; they traversed these hills finding out that travelling up is hard work while travelling down affords great pleasures.

When tired legs claimed the bike riding, they settled down underneath a tree in front of the house on the sidewalk and started their sidewalk-chalk session.  They soon found themselves coloring their own bodies with the chalk...laughing and giggling at the spectacle each other saw in the other.

Ella worked hard today.

She went to physical therapy and "played" with her therapist and the many toys that surrounded her.  She "climbed" a stair, reaching with great intent to grasp the objects she desired.  She pulled herself along the floor and up onto a mat, using her stomach muscles as best she could.  She sat on the Swiss Ball and rolled, worked on her neck muscles, and did some more stomach work.  She babbled with the therapist, danced her special dance, and showed off that she could put herself into a sitting position. All the while grinning and showing pride in her accomplishments.

She slept on the way home.

Ella played hard today.

When she met up once again with her brother and sister, she too played.  She sat in a box with a bag of blocks, she bounced on the mini-tramp with her sister (Ella sat and Ava bounced).  She ate a great lunch and played some more with mom when Ava & Henry went outside.

Ava and Henry worked hard today.

Maybe not in the same sense that Ella worked, but they did work.  They worked at including Ella in their fun, they worked at being as gentle as possible with her.  They worked at being the best role models they could be for her, and they worked at developing strong character traits~~specifically kindness and compassion.

This summer I am watching as my family grows closer together.  I watch as my kids develop their distinct personalities coupled with their interests and desires.  I watch as my wife further dedicates herself over and over to us.  

This summer will never be forgotten for us.  

This summer will help define who we are as a family.

This summer we all play and work hard.

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Wrestling...

The kids are sleeping now.

It's just Lindsay and me in our basement office.  Catching up on piled up e-mails, working Mama Bracelets in anticipation of the next supported fundraiser we have committed to.  Talking with each other in-between keystrokes and mouse-clicks.

Every day our kids give us a run for our money during their waking hours.  Ava is headstrong; a will of her own that she is practicing with on us.  She is developing her humor, creativity and overall personality before our eyes.  Henry continues to battle with his high emotions, seeking out ways to be heard despite his screaming.  He is gaining more confidence in himself, trying new things; making efforts to develop the sensitive side of himself.  Ella makes her way through the day as any other baby her age does.  She throws her food, plays with toys, and enjoys a good laugh. Her struggle, however, comes into play as she tries to move herself and cannot.  This saddens our hearts and tears at our souls...

Lindsay and I have changed over the past two weeks.  Our outlook on life has been altered drastically.  Thoughts of the future carry mixed emotions and often times we seek ways to avoid those thoughts.  We have become adept at talking about our immediate feelings as they rise in our souls; so as not to bottle them up and have them seep out in some other, undesirable way.  Many times it's just a sentence or two that we speak to each other, other times it's a long conversation--either way; we communicate.  

We feel the presence of so many people in our lives.  We feel the love, the compassion, and the prayers.  We know that being surrounded by so many brings us closer to each other.  We are thankful for all those who have crossed our paths; past, present and future.

We listened to a sermon this past Sunday about wrestling with God over the complexities in our lives, our world; and how in doing so, we actually come face to face with God.  We learned that in that face to face meeting we receive the full blessing of God.  

We are wrestling, as many people are, with the complexities of life and our world; struggling with God for answers.  I do feel that one of the many blessings bestowed upon us from that struggle is the love and support of so many caring people...and for that we are forever grateful.

Charge It...

She likes to touch.

We call it her "charging" time.  

She methodically places her index and middle finger of her right hand in her mouth and with the index finger of her left hand, seeks (with purpose) a skin surface.  As depicted in the picture above she rests her finger delicately on the desired skin and her body comes to rest, relieving all anxieties and frustrations.  She "charges".  

She'll "charge" on Mommy & Daddy, friends and family, even Sasa our dog.  Often, if there isn't another living creature nearby, she will find a place on her own neck to place her finger, gaining an internal charge, as it were.  It's sweet, endearing and part of who Ella is.

Ella visited the hospital this morning to get her blood drawn so it could be sent to The Mayo Clinic to have chromosome #5 tested for SMA.  The news of positive or negative results will come forth in 3-6 weeks.  

She was as brave during this blood draw as I had ever seen her before.  Once she realized that she was going to get poked, her lip quivered and she fought back the tears, the cry.  The nurse found a vein quickly and within one second had the needle in and drawing blood.  Ella didn't have enough time to react right away but they came--the tears.  She held fast and I held her tight.  Not 15 seconds later, while the needle was still doing its work, she stopped her crying.  She watched the medical tool do what it was designed to do; her brow furrowed a bit.  She looked at me as she sat on my lap, turning her head to catch my eye.  She didn't exactly smile but I knew she felt ok about this.

The nurse expertly withdrew the needle and seamlessly covered the puncture with gauze and a self-sticking bandage.  Ella was naturally curious of these and pulled on them.  We thanked the nurse and found our way to the hospital cafe to rid ourselves of the past moment and look forward to the coming day.

Our pediatrician has put in referrals to our medical group to assemble a team of doctors for Ella at the University of Chicago Medical Center.  We were impressed by the pediatric neurologist that performed her EMG there last week and are seeking him to be our primary neurologist.  From there, we have the flexibility to choose the remaining team members; including a pulmonologist, occupational therapist, orthopedics, and physical therapist~among others as deemed necessary.

We are also in the process of developing a 2.5 year plan with Family Connections, a service that coordinates in-home therapy and support in concert with Early Intervention for kids 0-3 years of age.  We will be meeting in early August with those (PT, OT, Dev. T) who have evaluated (and will evaluate) Ella.  

In the meantime we work with all three of our kids.  We work on loving one another, forgiving one another, playing with one another, helping one another.  We go about our daily lives and do our best with what we have.  

As Ella has often showed us throughout her days, we must also stop and re-charge with one another...

Our Drawings...

The five of us are in a place of drawing...  

...it is, however, different for each of us.

 *****************

I am drawing information about neuromuscular diseases from every source I can get my hands on.  I am finding , through my draw of resources, valuable information that will serve the purpose of bringing the highest quality of life for my daughter, Ella as well as for my family.  I draw information from reputable websites, those affiliated with major research centers, hospitals, and organizations that all are in the business of finding treatments and cures for these debilitating and often life-threatening diseases.  Each site gives me more resources from which to draw.  I engage in an intellectual endeavor at this time to educate myself for the sake of my family.  

 *****************

Lindsay draws strength, comfort and expression through the interactions of others in her world.  She reaches out to those she loves and they reach to her, to us.  She draws them in with her compassion for life, her family and for all children.  She draws the positive emotion and energy from people & from relationships.  She is practiced in the art of giving and receiving; connecting wholly to people of all ages.  Her draw is one that brings people to her and allows her to become a vital part of each life she touches.  She draws the strength she needs to help her child, Ella, as well as her entire family.

 *****************

Ava's draw is bit more concrete.  She delights in the production of artwork, per se.  She will spend hours a day coloring, creating, and exploring the world of art in her 4-year-old ways.  She takes pride in her ability to stay within the lines while coloring in her birthday-gift coloring pads.  She makes stories to go with them and shows us her "projects" throughout the day.  She takes the beauty of nature she witnesses around her daily and draws it on her blank "square papers" (it's blank white copy paper).  She makes scenes of intricate details including flowers, seeds, trees, people, rain, soil, grass, animals and more.  She sometimes spends long stretches of time  drawing and comes to us upon completion of her "work", as she calls it, to share the new "machine" that she has just designed to help her sister crawl and walk.  Her drawings are her way of providing love, support and hope for her sister and family.

 *****************

Henry's draw is two-fold.  He is a highly physical person who exhibits an equally high emotional persona as well.  His physical draw consists of making things move...pulling them to him or away from him.  Gathering every means possible to make things move...you would think he invented the wheel since he gets so absorbed in the movement of objects as they roll.  His emotional excitement and pleasure derived from this movement rings true for Henry.  His emotional draw also plays a role in our everyday lives when he can't seem to get things to work the way he thinks they should.  He finds frustration in his daily efforts to explore the world around him.  He draws himself within as he experiences failure.  He does, however, take great pride in showing that he has learned how to handle the high emotion he is graced with as he travels through his world, his days.  He draws himself outward again to once again tackle this world.  His physical draw will become instrumental in helping his sister be as mobile as possible, and he'll draw her emotions into the world of movement as they explore it together.  

 *****************

Ella's draw.  There's a variety of ways to approach her draw.  Of course, there is the physical draw of her blood that will occur on July 26 to be sent to the Mayo Clinic for the 3-6 week testing period of her genes to determine if she has SMA (Spinal Muscular Atrophy) or not.  Another way to describe Ella's draw is to speak of the way she draws people to her.  She has already, at the tender age of one year, an incredible support system of family and friends, professionals and strangers, at her disposal.  She has drawn this support system to herself through her personality that is ever-increasingly sweet.  She draws love, hope, and faith to her world as she will require all three to live her life to the fullest potential.  And of these three the love drawn to her will, by far, be the most important to her and her family.

She Plays On...

Lindsay and I spent the day with Ella.  We laughed with her, played with her, cried with her and rested with her.

Her EMG test was difficult to say the least.  She didn't thrash, she didn't resist.  She let us know in no uncertain terms that she was in pain...she let us soothe her, hold her and comfort her.  We wanted to take it all away from her.

The pediatric neurologist was as gentle as anyone performing this kind of test on a one-year-old could be.  He was compassionate, caring and efficient.

When the testing was completed he talked with us.  He told us that the EMG was abnormal in that Ella's motor neurons were not functioning properly.  A small percentage of her muscle cells were actually receiving the nerve signal. It is called 'denervation' (loss of nerve supply).  He explained that this was chronic in Ella.  

He told us that her condition would not improve...chances are they will get worse.  Not good.

We're devastated for our little "Squishy". 

The neurologist said there is a high probability that she has the progressive neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 2. Thus far, Ella has shown all the symptoms of this progressive disease..the EMG further lends support...which is what we were hoping against all along.

The next test being pursued is a genetic test specifically looking for SMA.  Her blood will be drawn next week, sent to the Mayo Clinic, and 3-6 weeks later we will know if Ella indeed has SMA.  

We wait. Wait. And wait some more.  Our minds race with scenarios, what-ifs, confusion, anger, despair, love, and hope.  Our stomachs turn and our world seems out of sorts. 

If she does have SMA, we will have to prepare ourselves and our children to face what we have to face...together for as long as she has. 

If not, we keep looking. 

We are numb right now.

We talk.  We cry.  We play with our kids.  We reach out to our friends and family.  We sit.  We are quiet.  We wonder.  We sigh.  We allow emotions to come and go.  We look to find what it means to be the parents of our children...to be the children of our parents.  We watch as Ella continues to play.

She babbles. She cries. She plays with us.  She reaches out. She sits.  She is quiet. She wonders.  She sighs.  She allows her emotions to come and go. She looks to us to be her parents...she delights in being our child.  

The world looks different now but she continues to play.

Peeking Around the Corners...

The shot above is from our family room.  It's a little space between the bookshelf and the couch, right under a window.  The vent is on the floor right next to the couch.  Summer offers cool air through the vent and winter furnishes warmth through the same grated opening.  This spot is one of Ella's favorite spots.  She can happily be there with a pillow or two, surrounded by her books, and safe from the quick moving feet of her brother, sister, and beloved dog.

The fast moving feet.  We watch Ella as she watches others.  She reaches to them as they run by her.  She looks on at playground play as children whiz by her; as they climb, jump, and crawl.  She is 13 months old now and her natural desire to move is strong, persistent, and cannot be ignored.

We bring her to the playground equipment.  She takes to it.  She touches it, "eats" it, and places her body on it.  We guide her down the slide and she laughs with delight.  We place her in Ava's lap as the two of them go down the slide...she feels the air rush through her thin hair.  We place her gently in the wood chips and she digs her hands in, feeling the sensation every kid should feel---the playground "floor".  

Her brother and sister come to her in the midst of their play, and slow down to capture a moment with her...she grins in satisfaction that they are thinking about her as they play.

We sit in a family circle on "her rug" on the deck and have the blocks out.  We build towers and the kids take turns knocking them down.  We bring the fun to her, for she has such a hard time bringing herself to the fun.  

The picture above shows Ella peeking around the corner of our couch, retreating from her safe spot amongst her books.  It's a fitting picture as we prepare to take Ella to The University of Chicago hospital on Monday (July18) to have her EMG (electromyograph) performed.  A test that will determine the  muscle and nerve function of her thighs.  A test that very well could help provide some answers and prepare the way for a diagnosis; to let us know what we can do to help our one-year old.  

A test that will help our family to turn the corner of the road we travel with our little "Squishy"...the corner that we are all peeking around together.

Window...

I look out my window

and yonder I see

The things that will come and the things that will be.

I peer out the glass pane

my vision is clear

the things I hold closely, the things I hold dear.

I spy from my safe place

my gaze is unknown

my heart grows so heavy from the weight of the stone.

I glimpse through the shades

obstructions have passed

life goes by so slowly and yet soars by so fast.

I seek to find meaning

through transparent debris

I find what's important; it always comes free.

I set my eyes on them

my family at play

The moment is fleeting, for long it won't stay.

My heart reaches outward

through clear glass before me

My self follows after to set itself free.

I no longer strain

to gain sight through the pane

It's all very clear now through sun speckled rain

My vision, my sight, so brilliant and bright

to care for my family, to follow the light

I've travelled my road, I've come to this place

I see the love streaming off everyone's face

The window may be here, it lets me see through

to capture what love is and feel it so true.

Sown Seeds...

The reading at church this week was about sowing seeds.  How if we sow seeds on the path, the birds can easily come and take them away...no growth.  If we sow them amongst the thorns, the thorns will strangle the growth.  If we sow them in the cracks of rocks, they begin to take root but do not flourish...no long term growth.  If we sow our seeds in rich soil, however, they will thrive...growth happens here.

Pastor Miller's sermon went on to remind us to seek the seeds that God has sown all around us in every moment; in every relationship.   To remind us that as we go through our daily lives to look for the opportunities to sow our own seeds of love.  To seek good rich soil to sow the seeds so that they thrive.

We celebrated Ava's and Ella's birthdays this weekend with friends and family.  We spent many hours preparing for the festivities.  We cooked and cleaned, shopped and organized.  We love throwing parties!

Our guests arrived and we celebrated...all day long we celebrated.  We mingled with friends & family, listened to music, ate good food, opened presents and enjoyed the company of all.

I thought about the sermon and how my children have been sown in the laps of love.  They are surrounded by good people.  Caring people. My children will thrive.  It is this soil made from family & friends that Lindsay & I come from. 

Our parents raised us with love, assurance, discipline and fun.  They taught us to be who we are and stand tall.

Our siblings grew with us as we went through many different stages and circumstances in our respective lives; looking out for us, protecting us, advising us, teasing us, and supporting us...all making us stronger.

Our other family members kept us in their hearts and minds for all of these years...helping us to know there are always people who we may not see all the time, but whom love us dearly.

Our friends, past & present have instilled in us a sense of dedication, fun, love and mutual acceptance that helped and helps us define ourselves.  

No wonder the soil in which we sow the seeds of love for our children is so rich...

Enjoy the richness of the following video from our celebration this weekend:

The Tables Have Turned...

I've worked as a teacher for 10 years now.  I have worked directly with children and their families for 18 years.

Long time.

In those years I have spent countless hours in meetings about children.  Whenever there is a concern about a child we (in the childcare and education industry) sit down and discuss the concerns.

I have sat with supervisors, other teachers, social workers, psychologists, physical and occupational therapists, parents, advocates, nurses, children, siblings of children, caregivers, extended family members, friends of families, and more in my 18 years working with kids.  

I have given my opinion about behaviors or progress toward a goal.  I have raised questions about what might be best implemented to serve a child in the best way possible.  I've listened to parents summon help from me and the system in which they find themselves.  I have read reports, filled out forms, made and taken phone calls, e-mails and letters.  I've spoken with kids about their life, their dreams and their perspective about what is happening to them and around them.  I've helped kids and parents obtain an IEP (Individualized Education Plan) when their child needed it to reach their potential.  I've sat in meetings listening to professionals and parents talk about a child.

The meetings in which they talk about the child.  When I sit in these meetings I often am called upon first to give my impressions, being the classroom teacher.  From there, the rest of the team gives their impressions, including the parent(s).  I get an opportunity to see the parents as they talk about their child who needs help.

I often wondered what must be going through their minds, sitting in this room with a host of professionals discussing their child.  What must it be like for them at home?  How much have they been through that brings them to this moment and how much more will come for them?  How do they do it?

The tables have turned.

Today Lindsay and I sat and talked with a professional about Ella.  We talked with Jen, a "Service Coordinator" from Child & Family Connections, an early intervention organization.  

Jen was very nice.  She was personable and we enjoyed her company.  She will be our personal coordinator for early intervention services for Ella.

She took us through the first step in the process.  I was now that parent.  I was the parent with the child who needed help.  What was I thinking?  What was I feeling? What brought me to this moment?

I thought that this is scary, but I felt loved.

I felt loved by my wife--because as we were answering the questions about Ella and our family, as we were filling Jen in about what has happened up to this point in time, both Lindsay and I connected on a level that I don't think we've connected before...a different kind of connection than we've had since we met.  

This is our child.  This is our family.  We know we have the love and support of so many people...no matter what comes next, we know that as we sit on this side of the table, we are safe and cared for.  And our love for each other is what brings us to every moment.

Ella's Road Narrows...

Ella helped celebrate her sister's birthday on July 5th.  She watched with wide eyes as Ava opened her gifts, she travelled merrily to the pool with us finding immense pleasure in the water as we took her further out than she's ever been.  She napped without making a peep (as usual), played on the deck with Ava and Henry, ate a hearty dinner and smiled as we sang 'Happy Birthday' to Ava.  She filled her mouth (and face) with cake.  During quiet time, she sat with her brother and sister, watching TV and enjoying family quiet time.  She played in the tub with her siblings and found her way to slumber soon after.

All in all a good day for our little "Squishy".

We received a call from Ella's pediatrician and then from her neurologist this day. 

Her blood work has been completed and evaluated.  There was thankfully only one poke Ella had to endure to gather enough blood for several tests.

The pediatricians office called first.  They told Lindsay that about half of the tests came back normal and the other half were not normal.  They told her further that they are going to fax the results to the neurologist since many of these tests are quite specific and they are not trained to interpret the results as the ordering neurologist is.  They did, however, give us the readings and Lindsay jotted down the notes.

We talked briefly about the results.  We decided to give it a rest and go on with our plans to take the kids to the pool to celebrate Ava's BD.  We would resume "talks" when the kids napped.

After the pool, we paged the neurologist and he quickly returned our call.  He reviewed the results with us over the phone.  The blood work did show some abnormal levels of several markers...he said the levels were just slightly above the normal range and they would not be considered a reason for her hypotonia.  In other words, a metabolic origin of the hypotonia has basically been ruled out.  Her enzymes are not playing a significant role in her lack of muscle tone in her thighs/hips.

Our initial reaction upon hearing news that the markers were basically normal was one of..."oh good"... but then the reality of that news hits us. If it's not a chemical problem, then it must be a physical problem.  Something having to do with the muscles themselves or possibly the nerves. Or both? It's like the good news is supposed to provide an end...but as we are finding out, it only narrows the road of possibilities.  We're used to getting results from doctors and then having a plan of action to "correct" things...not the case here.  We keep on keeping on.  We tell each other that we will figure this out...we tell Ella the same.

Ruling out the enzyme factor does rule out several more scary disorders.  We have eliminated central nervous system disorders and now metabolic disorders.  We are left with muscle and/or nerve disorders. 

Her EMG is scheduled for July 18.

Her neurologist has planted the seed of further tests if we continue to rule things out without finding the origins of the hypotonia; specifically genetic testing and a muscle biopsy.

We must wait for the EMG to show us what it reveals first...from there we will have a more clear view of the next steps.

They say hypotonia can be caused by any one of thousands of disorders.  Many people with hypotonia never get diagnosed or properly diagnosed.  

The road we travel with Ella is one that is traversed one moment at a time. It narrows as we go and we huddle closer together.

The moments of this day for Ella were spent really enjoying herself on her sister's birthday.