Tuesday, July 19, 2011

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.


  1. Mike, I am so sorry! I will pray for your family. One of my best friends had her baby pass away this week. Hearing about your situation makes me think of my friend and my heart breaks for the both of you. Although my friend is totally grief stricken, she said something that struck me. She said that although she goes through the emotions of sadness and anger, she still believes that God can bring something good out of tragedy. Never loose hope.
    God Bless.
    Kathy Bernahl

  2. Lindsay and Michael,
    We send our love and a big hug for baby Ella. Take one day at a time and lean on the strong love you have. You two are amazing. Your strenght, love, compassion......wow. xoxoxo We love you and we have you in our prayers.
    Aunt Linda and Uncle Bob