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.

Delightful Four...

She knew the moment the gift was out of the box.  It was a purple Rapunzel dress.  Her expression lit the morning up and the birds sang with her as she beamed.

Four years old.

Ava is a beautiful girl.  She lights up with delight in the things she finds fascinating; which, by the way, is almost everything.

She does however, have her special loves in her life.  She adores flowers, beautiful princesses, playing imaginary games with imaginary people, coloring, drawing, writing and learning.

She is a sensitive girl; developing a sense of fair play and what it means to treat others well.  She works on this with her brother and sister.  She experiments with playing, with sharing, with taking care of another.  She makes mistakes and tests her limits.  She experiments with language, with tone and with attitude.  She experiments with nature, deciding how to treat it.  She asks questions...oh so many questions.  She does all of this in the comfort of our home; with us; around us; and while we are just within her reach.

Outside of the home she assimilates all she has learned inside the home.  She brings compliments from strangers, acquaintances,  church members, teachers, friends, and family.  They go on about her behavior and how well she does.  They tell us we have an outstanding daughter in Ava.

We agree.  We are blessed.  Our oldest is a fine example of what a good person is all about. 

She cares for others.

She cares for herself.

She helps when she can.

She asks for help when needed.

She stands up for herself.

She protects those she loves.

She studies things to understand.

She understands how to study things.

She delights in her life.

Life delights in its Ava.

It is my privilege, my honor, and God's gift to me to raise this child.  I do it not alone.  Lindsay has dedicated her life to nurturing her, instilling in her the values, ideals, morals and life lessons that help bring her to the fullness of who she will be.  We gladly and with open hearts share in this delight.

She is four.  All day long she eloquently reminded us that she is four.  In every way she could.  Whenever the number four was able to present itself into a conversation, she gravitated to it and let us know. It was a beautiful self-testament to her birthday.

Happy Birthday Ava...we love, love, love, love you.

 

Morning Thoughts...

Mornings.


They are confusing for me now.  I open my eyes and find myself in the same room I've slept in for the past 5 years...nothing new there.  I roll over to see the same alarm clock, next to the same lamp, both keeping my cell phone company.  So far, no confusion.  


Then the thoughts flood my mind.  

They enter as a storm sweeping from the front of my brain and travelling at the speed of light toward the back, parting in all directions, gathering speed and power.  They push out the remnants of dreams and fill every crevice of my awareness.  There is no rhyme or reason to the path each individual thought takes as they mold themselves into my reality of the morning and the day to come.

kids.

mri.doctors.

legs.tests.crying.walking.future.school.

degenerative.love.wife.universityofchicago.muscles.why.

murphy.ava.family.emg.sasa.henry.ella.choices.tired.breakfast.

holdingkids.cellphone.news.waiting.bloodtests.God.

sleep.fear.closeness.specialneeds.comfort.edwardshospital.

henry'smedicine.friends.mamabracelets.

carseat.smatype2.developmental.

long.journey.Jesus.marriage.

grass.adaptivedevices.vacations.

death.humanbody.peace.answers.

support.shoesforella.worry.

smileswithchildren.

discipline.strength.how.help.

easterseals.earlyintervention.

nerves.preschool.control.lackofcontrol.

caring.problems.

joy.photos.smellroses.

My mind settles itself and I look at my family, who by this time is usually around me...I remember we are here together, we grow together, we lean on each other together.  My day begins with love surrounding me...I must take heed to that love.

Ella is scheduled to have her EMG (muscle/nerve tests) at the University of Chicago on July 18th.  This test requires that fine needles be inserted into her thigh muscle and electrical impulses are sent directly to the muscle.  This will produce results that will tell doctors about the muscles ability to receive signals from a nerve as well info about the innervating nerve.  Needless to say, we are not looking forward to this procedure since it will undoubtedly be painful for Ella, but we are anxious to know what is happening to our one-year old.  We will be there with her and for her. 

We wait for the results of blood tests to give us more information about her enzymes and whether or not they are playing a role in her hypotonia.  The waiting game seems like a never-ending one.

It's funny.  I go to sleep with a clear mind...understanding all that I need to and feeling full of faith and assurance.  I always, however, wake up confused...I wonder when that will stop?