We went to the neurologist appointment, and he began with "We usually don't give children this young medication, we usually try therapy first." He asked me to tell him what's been going on and why I brought him back in early.
I told him he has much higher tone that last few weeks. The peditrician agreed that he's in pain and uncomfortable, and so did his therapist. We are moving him to twice a week therapy for OT, and also adding once a week PT. He hardly naps (only 30 min cat naps at a time because of the pain), wakes up grumpy. He cries alot. Struggles with his bottles every day. He's barely maintaining his growth curve, and the peditrician and therapist thought some medication would help him gain weight. He's always uncomfortable, he has trouble eating and gets lots of bubbles, had trouble burping. He arches at times and it looks like he will touch his toes to his head. He sleeps at night pretty well, because of the no sleep during the day. We hardly see any smiles, when he tries to hold the bottle he ends up pushing it away, and same thing with playing with toys. He watched me feed him a bottle which he did pretty good about.
After he finished and he woke up a bit, he examined him, and after he picked him up with his arms he still held his arms by his chest as he was supporting all his weight. After one look he said I think we do need some medication. He also check some reflexes. And then told me about the medication, it will make him sleepy, but that effect seems to wear off after time, but we don't want him sleeping too much, we will start with a low dose, but will up it over time as needed by his tone, there's no one correct dose for everyone, it's whatever corrects the problem without too many side effects. We will start out with a dose of .5 ml once a day and then increase as needed. The prescription will be for 1 ml 3 x a day, but we don't want to give that much right away.
We took the prescription to the pharmacy and they had to order the medication in a liquid form as they usually don't carry it in liquid form. The medication is
Diazepam ie valium. We should have it tomorrow.
Many of my friends ask how I am doing: I was both relieved that we could get the medication because I knew he needed it and I don't want him to be in pain anymore, and that it would help, but at the same time I wanted to cry because my perfect baby needed medication to make his life comfortable.
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."
5 comments:
May God continue to guide your situation. I pray this medication will help your little one.
Dear Lydia,
I want you to know that your mother and I share your grief. May God richly bless you for your efforts for the long term here. I love you,
Dad
What a difficult situation and decision. I'm praying for strength for you.
Laura
Do you think maybe the pain, arching and stiffness could be reflux??
He was tested for reflux in the hospital and didn't have any. It's so much better with the valium, and now he only does it when he needs to burp. Which he can burp so much easier with the Valium too.
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