And I'm here to tell you

My story today.

It all started out,

In my momma's tummy...

When the doctors said

That I would never be.

My family cried and

They all prayed....

But I wasn't worried,

I knew I was staying.

The doctors said that I

Would be real small, but

At over 8 pounds...

Mommy didn't think so at all.

I am nine months old now,

And although I cannot see...

I can still tell,

How much everyone loves me.

Them doctors still say

For my family not to make plans,

But God told me,

That it is all in His hands.

I have alot of friends,

In this world that is just like me.

It is hard to see all of us kids

That have certain inabilities.

We can't play outside like some,

We can't ride bikes or tie our shoe.....

But we know as long as we pray to Jesus,

That there is no limit to what we can do.

I've been doing really good,

I have a bunch of support,

Like the amazed friends and family,

Who once were scared my life would be short.

I love my Mommy, my Daddy,

And my brothers too.

And I love Heaven above for

Making my dreams come true.

Well it's my naptime,

I guess I have to go....

I will be sure to tell ya'll more

On my journey as I grow.

Testimony:

Dear Logan,

When I first found out you were coming,

I have to admit I cried.

Yes, I was a little scared...                     

But you were nothing I wanted to hide.

The day after we found out,

We were already making plans...

Picking out baby names and saving

Money in coffee cans.

When my belly began to grow with you,

The doctors brought me in,

They told me that your brain was gone,

And that you would never live.

Over the next few months,

I began to bond with you even more,

Praying to God every night,

To take care of our baby boy.

Depressed... we made your funeral plans,

Chose coffins, plots and such.

That is when all of this became reality,

And when I realized I needed you so much!

Your Uncle Johnny took it pretty hard,

And he finally began to pray.

Just as he did eight years ago,

For His lil' miracle, "Tay Tay".

The whole family was indenial,

And I stayed pretty mad.

Confused why God would do such a thing,

And take away the life you never had.

I finally didn't blame God anymore,

As I stared at ultrasounds of you...

I figured it was an honor,

For God to give you a halo too!

Well, little did I know,

You had other plans.

You decided you didn't want to go to Heaven yet,

And asked God for one more chance.

Two thousand five, on February, twenty fourth,

I was one week over due,

The doctor finally induced me...

I thought this was the day that I would lose you.

As my contractions got more painful,

My tears began to shed.

I couldn't imagine seeing

My little boy be born dead.

Finally! I heard you cry!

And my heart began to melt,

That was a surprise nobody expected to hear,

A million words could not explain how I felt!

You were born a good size boy,

Five pounds more than doctors said you'd be...

Even bigger than your older brother with

Twenty three inches in length!

Then I got to hold you in my arms,

And I named you Logan Jay...

For a moment I was so happy,

Then I remembered the doctors say.....

I recall hearing them say if you ever made it here,

That you still wouldn't have a chance in life,

And that was my biggest fear!

They said "if" you did make it,

Your life would still be short.

With only "Six hours maximum...

Living off life support."

Oh boy! You showed those doctors up,

Because you never needed a machine...

To live the life that God blessed you with,

Your strength has inspired me!

That night, you were flown up to Tulsa,

And you stayed overnight by yourself...

Because mommy could not leave the hospital

Until the next day, when she was well.

When Uncle Jimmy, Nana, Me and Dad arrived,

We each took turns Gazing into your beautiful blue eyes.

Your NICU nurse heard us whispering about you,

She smiled, then walked over to us,

And then told us everything she knew.

She told us a doctor diagnosed you with

Hydranencephaly...

Another said you did not have any optical nerving,

That you would be blind permanently.

We drove back and forth every night,

A four hour drive each day...

Taking care of big brother Jaydon,

And calling to see if you were okay.

Finally! We got to bring you home!

Friends and family can't wait to see,

"The child who would never make it"

Is now our "Miracle Baby!"

You are such a blessing to us,

We love you little "Logie"...

This poem is for you, Logan Jay Nixon,

And this is your testimony!

I love you Logie! You are truly our miracle!

                         ~Momma~

Description
Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.
Treatment
There is no definitive treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt (a surgically implanted tube that diverts fluid from one pathway to another).
Prognosis
The outlook for children with hydranencephaly is poor. Death generally occurs before age 1.
Research
The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent developmental brain disorders, including hydranencephaly.