Tuesday, April 8, 2008

Paci Experiment

Tonight (Monday Night) I brought in paci's of all shapes and sizes.  (Ok just 2-3 different kinds)  I did this so I could try to find a paci that William preferred more than the soothie type that the hospital has, as he doesn't like even letting that paci in his mouth.  While I don't know if he sucked on it as it's hard to tell unless it's your finger and you can specifically feel him sucking, but he did let and allow the Ortho Style paci in his mouth.  He even held it in for a while, and possibly took a few sucks of it.  he also did some routing for the paci when I rubbed it on his lips this evening.  The night nurse said that he sucked on the day nurse's finger today.  Yeh! He's letting someone other than mom see him in action!  

We still need continued improvement and a stronger gag, also we need coordinated movement of the food to the back of the mouth to swallow.  And if we want to be ambitious and avoid the g-tube surgery then we also need to quickly start nippling all of our feedings.

The Speech therapist postponed Monday's 2pm appt to Tuesday, so I'll be meeting with her at 2pm Tuesday. Some topics for discussion are smaller feedings before oral stimulation to encourage him to be hungry and try, as Saturday's sucking for 10 minutes was on a feeding that was an hour late.  Maybe give him the same quantity of food at 6 feedings instead of 8.  Maybe do a smaller feeding 40cc before working with him to take a bottle.  Another topic is letting him nipple, or attempt to nipple his feeding, also possibly after a smaller feeding prior.   

Also, I do read the comments religiously, so if you have questions you want answered feel free to post a question in the comments, or feel free to email me directly too.  


aja said...

glad he has some interest in the pacifier - and that the nurse witnessed the sucking. lol

in the pics the boys already look so much older!

Anonymous said...

I'm so proud of Tommy too, for stepping up tp sharing with a brother he's so like Jason his cousin in ways Lydia you are so strong ! L Em

Unknown said...

Glad to hear the progress, we will continue to pray for William and your family. If you need anything, just email me - I can watch the boys at my house during the day (anytime between 9:30 and 1:30) most weekdays, or late evening (after 8) too.

Unknown said...

Great progress William...keep it up! We are all cheering for you. And hang in there Lydia. You are doing a fantastic job. God loves you.

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."