Saturday, April 5, 2008

William Gagged tonight by accident

Today(yesterday) I went and met with the occupational therapist (OT) at 11am again and the Speech therapist (ST) at 2pm.  The OT showed me the exercises she does to help William's range of motion.  She showed me some of the same things as last time, and also noticed he was getting a flat spot on one side of his head, so she re-arranged his bed and moved him around so he would work on strengthening the muscles on the other side too.  Also the OT said she was seeing more of his startle reflexes and a few others too (but I don't remember the exact ones.)

The ST sat behind me and told me how to play with his mouth and work on getting him to curl his tongue around  the finger.  She also brought a nuk thingy with bumps on it almost like a baby tooth brush, or dog chew toy.  She also said I could use drops of breast milk on my finger or object I was putting in his mouth to encourage him to suck, and for him to allow the object in his mouth.  He didn't like the nuk much, but gave several sucks to my finger, some week and others pretty strong.  

I went back this evening at 11 pm feeding to work with him some more.  He was wide awake, but didn't want to allow much in his mouth and was more easily over stimulated.  Over-stimulated for him is breathing a little funny, hiccups, looking away, a look of fright in his eyes.  When I work with him on his mouth stuff I usually try (hard) to avoid gagging him as I don't want him to associate unpleasant sensations in the mouth with eating as I usually try to do oral stimulation around a feeding.  Well this evening I was doing the normal things I do with a finger gently massaging the inside of his mouth and when I first inserted my finger in his mouth he gagged on my finger, and it wasn't that far, and as I said I try to avoid doing that.  I'm encouraged that he gagged for me even unintended.  Little baby steps of progress today were both the sucking on the finger more than I'd seen in the past and the gagging.  The speech therapist said she saw more of his stress signs today, so since she now knows his "pain" indicators she's going to try the unit on his neck that electronically stimulates the tongue on Monday.  So Monday I need to go up to the hospital around 2pm, and could really use someone that day to watch Tommy and Micah at that time (1:30PM -3:30PM)  Email/post a comment if you can help at that time (my house would be best as Tommy NEEDS his nap about that same time).  Thanks!

1 comment:

progredi! said...

Just wanted to let you know Monday is covered. Either Kara's friend or I will watch the boys in the afternoon.

Tracy Daniel will take the night shift, either at your house or the hospital, whichever you prefer.

I'll send you a more detailed email.


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."