Friday, April 18, 2008

Changes in Plans Friday

I'm just along for the ride, apparently the doctors and William are picking where we go each day, so now it's a day by day event.  

Friday, we changed the plan to try for stamina of doing 3 back to back feedings.  So it was decided that instead of doing an 11am feeding we would do 5pm, 8pm, and 11pm.  So at 5pm Speech (Jennifer) did the the feeding, she called to report to me that he did 60 cc in 20 min.  YEH!! It's wasn't just a freek thing for Mommy.  Then I was there for the 8pm and 11pm feeding and he did 60cc in 17 min for the 8pm feeding another YEH!!!!! And at 11pm he was a little disorganized and worn out, and he still did 60cc but in 30 min still YEH!!!  They will gavage the reset of the feedings tonight and we'll see to morrow what the plan now will be.  

Also, Williams weight tonight was 6# 3.8oz (+1.2oz from last night).   

Keep praying.  The doctor Friday mentioned that he no longer needs the Fonduplication surgery, but she still suggests (depending on the weekend) the we do the G-Tube surgery so he can come home quicker.  So please keep praying he knocks everyones socks off this weekend and makes great strides forward.  We meet with Dr Lucena tomorrow to discuss the plans for moving forward and getting him discharged.  She even mentioned that he may possibly be able to discharge next week.  

Also concerns: 
a.  he's not taking the fortification by mouth (so he needs to be able to tell us how much he needs to eat, or gain weight on only breast milk feedings.)

b.  he's on medication that's given via ng-tube, he will probably need to take this medication orally, and he's hypersensitive to change in taste, the only thing he really likes in his mouth is breast milk, he doesn't even like the sugar water they have to dip his paci in.

c.  More stamina to finish more feeds so we don't need a g-tube.

In other news I met today with the occupational therapist and speech therapist that we will be working with upon discharge.  They are thrilled with the progress he is making so far, and can't wait to begin working with him upon discharge.  They saw very positive things with him today, and are confident that he will be greatly helped by their therapy, and they believe that he will be able to nurse (they will help me get him to the breast), and also help his hypersensitivity.  They worked with the conjoined twins who at two were not eating anything, and they were eating lots of stuff after working with them, and now eat almost anything.


Anonymous said...

This is great. I said it earlier, I don't think William wants to have surgery. What amazing things the Lord is doing with this child.

Unknown said...

Prayers always for William and his mommy. You both are doing a great job. All things are possible with God.

Anonymous said...
This comment has been removed by a blog administrator.

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."