The meeting with the doctors was pretty uneventful. Most of the information discussed was not new to me as I've been meeting with the doctors daily and discussing Williams condition with them. This was a chance for Rob and his mom and brother to hear what's going on so we can be sure we are all on the same page for the surgery. Also, Rob hasn't been able to be at the hospital to see William so it was a chance for him to hear the update on what's going on with his care first hand as he's only been able to hear from me. What I hadn't shared on the blog previously is the doctor really feels that cognitive/upper brain function is not affected long term, and that intellectually he feels very optimistic about William, that his movement and tone are much better. What he said is affected is the
basal ganglia function of the brain, or more specifically what's involved with sucking and swallowing. This is the only location where the recovery is slower. So for William to come home safely sooner he will have the G-Tube surgery with the Nissen. They will schedule the surgery hopefully for Thursday or Friday this week, but it's dependent on the Surgeon, OR and Anesthesiologist. William will then be able to go home approximately 2-3 weeks following the surgery (optimistically 1-2 weeks).
Swallow Study -
The swallow study was done, and showed several things we knew already. He had a poor suck (we knew this). He also had poor movement of the liquid to the back of his mouth. He did get some up in his nose, and he also swallowed some, and didn't aspirate, but they only gave him 2 cc of fluid (60 cc in 2 oz), so he could have aspirated if they gave him larger quantities of fluid, there's no way to tell. This gives us a base line for next time, and allows us to see he is swallowing saliva as we suspected.
I'm encouraged to see him routing slightly more, and also trying to shift his head/body toward the breast. He even opened his mouth this evening when I moved my finger closer, so hopefully Lord willing he will continue to improve in this directly.
Thanks for your prayers! It is really encouraging to me to see the comments on the blog and know you are reading, and praying.
Here's a verse that a friend of mine shared with me at my shower that's been encouraging to me recently:
Psalms 71:6 For Thou are my mode; O Lord God, Thou art my confidence from my birth; Thou art He who took me from my mother's womb; My praise is continually of The.
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."
3 comments:
Continuing to pray.
This is very encouraging. God is so good. You're in my thoughts and prayers.
This gives me great relief and I give thanks to the Lord. Yes, he has a long road ahead of him, but in the end he is going to be ok. I will continuously offer my thanks to the Lord for what he is doing in Williams life. I also thank the lord for he has a perfect mom and dad and brothers (and the rest of his family) that are strong fighters willing to fight the fight with and for him. I love you guys.
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