Monday, April 7, 2008

William Progress 2 Steps Forward 1 Step Back

Saturday when I was visiting for the 2pm feeding (ok I was late and so was the feeding), it really happened at 3pm, but William sucked on my finger for a good 10 minutes.  The best length of sucking he'd done so far.  Usually all I get is one or two sucks here and there.   

Also I got the chance to speak with the surgeon that's on-call this week.  He was younger and had much better bed-side manner than the previous surgeon.  He explained to me why he likes to wait (if they can, and in Williams case they can) till babies are 3000 grams (6 lbs 9 oz).  He's seen babies have much better outcomes, and less likely for the nissen part of the procedure to come un-done if we wait till 3000 grams.  Also he even said with the progress that William is making we will need to re-evaluate him when he gets to that weight because he may not need the procedure any longer.  His gag is becoming more and more regular, and the doctor even told me Sunday when I was visiting that he saw a gag every time he tried, that it was a medium gag, but that there was a gag.  So for now the surgeon said he was going to put down the scalpel and back away from the baby.  

In other news I noticed some jitteriness on Saturday while visiting that I hadn't seen previously, in various parts of his body, especially the eyes, and it's unclear to me if this was normal newborn immature nervous system, or if it was seizure activity, so since I was told he's on the lowest dose of the phenobarbital for his weight and he's grown, it's possible his levels are too low, so I asked the doctors to check this, and they plan to check the levels Monday am. I didn't see any of the same jitteriness on Sunday though, so that's good, but I'm still glad they are checking the levels.  

Keep praying for William to make improvement!


Lori said...

Such a good mommy for being so attentive. You really are helping this baby to improve! Hugs for the week. said...

I am excited to hear the good news. I am sorry that he might need more medication. I know that is scary.

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."