Wednesday, April 8, 2009

William Detailed Update.


ECI brought this chair by and I really like it, it's a little big for us still and he can still fall over it in, but it's much better than previous options. Also, our ECI told us that April is a great time to apply for equipment because it may take a while to be approved, and then by the time it's approved we'll have met our out of pocket and deductible etc, so what do I need? I'm looking at a kid kart special needs stoller possibly, something that we can take to family's houses so William can interact with others and participate sitting up. With him sitting in the chair more and being engaged with us, he's making more noises and trying to talk and even giggling (see the video below).

The nutritionist came by again today. Wiliam was 16lbs 11oz (up 11 oz from last time) This was a GOOD gain for the time period especially with him being sick and not eating well for most of the time. She's coming once a month till we get William back on the growth charts. She calculated that my avocado salad with honey mustard dressing and sesame seeds that I made William in the food processor is 100 calories an ounce. He needs about 1000 calories a day, and he gets between 600-900 from milk and oil we feed him. He gets oil 2-3 times a day (1 tbs with a dash of honey for flavor). Then he gets 2-3 8-10 oz bottles.

Gastro Doc:
Williams had some symptoms of reflux lately, arching, spitting up if laid down after eating, a puddle forming under his head if he's laid down, throwing up if the Diazepam doze is too low. Swallowing at random times. So we have an appointment on Monday to see the doctor that the Nutritionist recommended.

Eye Doctor:
William's vision has always pulled to the right pretty bad, and we've thought that we should take him to the eye doctor for a while, And his right eye seems to be the weaker eye, especially when he's sleepy. As well as he still has the Nastagnis(sp?) shaking of his eyes as he focuses (a normal symptom of the mediation he is on). So I made an appointment for Tuesday the 28th with a pediatric ophthalmologist.

Handicap Sticker:
I'm considering asking the doctors for a handicap sticker as if I'm out with all 3 kids it can be kinda tricky getting them all out together especially now that William has outgrown his baby car seat.

1 comment:

Curdie said...

Yay for good weight gain!

That would be really great if you could get a handicapped sticker. A close parking spot would make trips to the grocery store easier.

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."