Tuesday, January 11, 2011

Neurology, Sickness

Willam's neurologist called to update us on the re-read of the MRI that was done at Children's Dallas. The Neurological damage that was seen after his birth is still there, and it's still significant, both sides of his brain, and also his cerebellum.

From Wikipedia:
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such as attention and language, and probably in some emotional functions such as regulating fear and pleasure responses.[1] Its movement-related functions are the most clearly understood, however. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity.[2] Because of this fine-tuning function, damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning.[2]

She also continued to mention how she couldn't support us not starting him on seizure medication and suggested that we find a new neurologist that would support us in this regard.

I called our pediatrician about this and she also suggested another neurologist that could possibly support us in pursuing our options regarding seizure treatment. We are working with our pediatrician, on improving his nutrition to raise the seizure threshold. We seem to have some success so far, we've gone from seizures once a week in November, and beginning of December to spreading out in December to once every two weeks at the end of December and hopefully back to once a month in January.

I have to admit it's hard looking at him at this point at 2 almost 3 and seeing exactly what he can't do, how he can't participate like his brothers, like his twin. With the constant reminder every day that Micah talks to us, and tells us stories, but William is only able to grunt and smile. But at the same time it's encouraging to see his likes and dislikes and how he communicates those to us. He still tries so hard, you can tell when he wants up by how he hold his hands and tries to lift his head, or if his unhappy with his brothers for how they were too rough, or how he smiles at them when they talk so sweet to him.

Then what makes it even harder is to see him sick, laying down no desire to move, like the spark is gone from his eyes. Struggling for a cough, struggling to breath, struggling to move a single muscle in his body. What's a simple cold for you or I (medina) virus in this case, similar to the flu, or RSV, has wiped him out for 2-3+ weeks. Oxygen Saturation low, coughing fits at night, breathing treatments, sleep schedule all messed up, sleeping till noon every day, unable to eat anything, trouble with liquids even via feeding tube, too much and he's vomiting mucous, too little and he's feverish and dehydrated. A big reminder of why we have to be careful of exposure to sick people. He very easily could have been in the hospital with this one, if it wasn't for the wonderful night nurses giving him fluids, keeping him hydrated, and giving breathing treatments, suctioning, and CPT. For the last two weeks every 3-4 hours at night. We caught it early enough and started the breathing treatments. Also at the beginning the nurses were faithful to show up. So he didn't miss breathing treatments at night.

1 comment:

Sara said...

I think about your sweet family often. Sorry William is having a rough go. You are such a great advocate for him.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."