Tuesday, April 1, 2008

Long overdue update.

Tommy is loving being a big brother.  He wants to "hold the baby" all the time, and he also gives tons of kisses.  Also Tommy is working on getting his room re-done to move the toys out of the room, and have the closet and dressers re-organized to accommodate the clothing of 3 boys.  Toys are moving to other rooms in the house as Tommy is moving to a big boy bed.  He had been in the play pen before now as it helped him remember that it was bed/nap time, but he has now started to climb in and out so he's now transitioned to a big boy bed.  

Micah has been home from the hospital for 2 weeks now and gained one pound in the first week. He's not due to return to the pediatrician till his 2 month checkup.  Scheduled for May 12th. Currently he's doing a lot of eating and sleeping and growing, all things a baby should be doing. Micah is nursing well, and sleeping through the night 4-5 hours at a time.

Lydia (me), I went to Lonestar baby today and bought 2 car-seats we will use these for Tommy and Micah, and they are smaller and will allow 3 car-seats across the back seat of the car.  Lydia is pumping milk for William and has a freezer full at home and the hospital has plenty too. Lydia called today and made appts for Tommy's 2 year checkup and also for William and Micah's 2 month checkups.  

Ok now for the update everyone's been looking for (William Josiah), and part of the reason we haven't had an update in a while.  It's hard to process the information when your told your child needs to have surgery.  Luckly nothing is urgently needed, so we've have had time to be angry and mad, and deal (you know all the stages of normal grief) with the fact that William will be home sooner rather than later by getting this surgery.  (Hopefully max 2 weeks, and he will be home.)  We were told last week that they wouldn't do the swallow study it's too dangerous, and that they recommended a G-Tube and Nissen Fundoplication.  The G-Tube is to feed him, and the Nissen, is to prevent him from refluxing his food, and then asperating on the reflux.  We realize the G-Tube is necessary, but are hoping to avoid the Nissen if possible, but probably not, but we've asked the doctors this week if they will do a swallow study just to verify that it is necessary, and they've agreed.  The swallow study will be tomorrow.  Based on the results from the swallow study they will proceed with the needed surgery(ies), and it will be scheduled depending on the availability of an OR/Anesthesiologist, and Surgeon.  We have a meeting with the doctors and others from the hospital to ask our questions tomorrow at 9am. I'm sure I've forgotten to explain things as I'm not posting this when the news was fresh for me, so if you feel I've left something off please feel free to ask questions and I'll answer with more details.

In other news on William:  He is doing well in his own crib and is maintaining his temperature great, and moving around more and more each day.  His muscle tone is now recovering to that of a newborn and we expect it to continue.  He is also coughing and gaging more frequently, along with sneezes too.  He's also having periods of being very wide awake and alert.  He makes good eye contact and also seems to track somethings.  His movements are looking closer and closer to those of his brother Micah, and he's improving daily.  Also today he's graduated to only having the chest probes to track breathing and heart rate, the foot probe for heart beat and O2 saturation has been removed!  Yeh! One less wire.  He's currently being fed 52 cc every 3 hours (a little less than 2 oz).    I think that's about it, I'll post more later as I need to get to bed for our meeting in the am.


Unknown said...

Your family is in our prayers. I'm glad William will be coming home soon :-)

Liz said...

can these surgeries be reversed when he doesn/t need them any more?

Anonymous said...

I sure am praying and want you to know that Dad and I love you. Love, Mom

Unknown said...

God bless William. I pray that you get good news tomorrow.

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."