Friday, March 21, 2008

Update on William and Micah

Sorry it's been a while since an update.

Micah Joe was able to come home Tuesday Afternoon, and we've hardly set him down since having him home.

Wednesday - We had an appt with the neurologist that evening at Williams bed side, and the neurologist didn't tell us much that we didn't already know. He's doing as well as can be expected for the assault he took with not breathing. Basically we don't know when or if and that William is the boss, and we're all along for the ride.

Thursday - I had a Psyc Evaluation in the AM that was 5 min with a counselor who asked a little of the details, and then 4+ hours of paperwork. In the paperwork was about 1000 questions asking in a variety of ways do I abuse alcohol, drugs, beat my children, or am I suicidal. Also several phycological profile quizes including myer's brigs personality questionaire.

Friday - Early am (12am) after we went home thursday night I headed up to the hospital by myself so I could see William. He was wide awake the whole time I only intended to stay about an hour, but I just couldn't leave him so wide awake. He was looking at me, the lights behind me, my cel phone light as I took several pictures (below) with my cel phone. He even had the cutest squeeky hiccups. I didn't leave till close to 2:30am. Micah stayed with daddy, and then Daddy had to call because the Mommy's gone radar went off and daddy had to fix Micah a bottle. I also had the chance to chat with my chiropractor on the phone about Williams condition, and we evaluated a weekness on the Right side of his body, so she had me exercise things on that side of the body (move his toes, ancle, knee, hip, fingers, wrist, elbow, shoulder) to encourage the nerves on that side to fire. (What can I say, we're trying everything.) It seemed to help with his routing reflex slightly.

Friday afternoon I had a friend from church bring us a wonderful dinner and take me up to the NICU so I could see William again, and she held Micah so he would have access to Mommy if he needed to eat. While I was up there I had a chance to speak to the doctor and see if there was anything new. The doctor said he was defiantly more movement and activity. And that he also thought he felt a gag this morning when he checked him. YEH!!! PRAISE BE TO GOD!!! We are jumping for joy at this news. So this means that they will need to do a swallow study (x-ray with radioactive stuff to make sure if he swallows stuff it goes into his tummy and not his lungs). Also the plans for this coming week include doing another EEG test, and also an MRI. We've requested that the MRI be done by strapping him down and not with sedation as we would like to avoid anesthesia/sedation drugs if at all possible. The DR said he would check with the radiologist to see if this is at all possible. Also as I was leaving I tried the paci with William and he gave it a slight suck, which is huge progress as before he wouldn't even close his mouth around it. Please continue to pray that he will continue to make progress to sucking and swallowing.


Anonymous said...

wonderful news!!!

Dawn Endres said...

That's Wonderful! Keep it up William! I will be praying he comes home to you soon. *Hugs* said...

I am so happy. He is such a sweet boy!

Anonymous said...

so glad he's doing better...hope he keeps improving! im sure with all the love and prayers he is getting he will be home soon!

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."