I participated in the CST 1 class over the weekend so I could perform CST for William, instead of always having to go pay for therapy, also William and Micah participated in the classes. They were subjects in the Pedi's class.
William received CST Therapy Wednesday, Thursday night after class, Friday Night after class, 3 hrs in the pedi's class with 2 therapist on him Saturday, and Saturday Night (my practice), and 1 hr Sunday in the pedi's class with 2 therapists on him, and then Sunday night and Monday night. Then Monday and Tuesday he's been floppy when he is usually high tone. We're going to have to lower Williams dose of Valium medication due to him being floppy.
Just thought I would share.
William:
7/22/2008
10lbs 9.5 oz 0.18 %
23in 0.78%
HC: 15.5 in 1%
We need to get his as much therapy as we can, (we discussed today also getting therapy CST 2 times a week now), and we will also be getting PT through ECI, and maybe OT also. Also, we well keep feeding him bottles and talk about feeding tube again if he can't do solids (after 6 months) or falls off the growth charts, right now he's holding parallel below. His muscle tone is worse and she agreed, and that we need to see the neurologist and get on a medicine for this as this may also help him gain weight and not use so many calories holding muscles so stiff. I've already put a call in the the neurologist nurse to get in, and she called back while I was at this appointment. So I will call again in the am.
Micah:
7/22/2008
15lbs 12.5oz 85%
25.5in 84%
HC: 16.5 in 69%
Micah has a slight cold today and he's doing fine talking using his tongue, saying 'Hi' and 'Mama', just needs to rest and get better.
William and Micah are now 4 months old! I can't believe how the time has flown by. Love you guys more than words can ever say!
Micah is rolling over and sleeping on his tummy, and sometimes in a half side lying position that just looks so relaxed, and William is growing, and it looks like the yeast is almost gone! He's giving us little smiles and an occasional coo, Micah is also talking up a storm and can say Hi and several other oohs and ahhs.
I've been asked several of the abbreviations I've used and what those mean:
How is William and what's the prognosis: He still resists eating and has trouble enjoying it. It's lots of work for him still. He eats the minimum, and is gaining the minimum needed (1/2 lb a week), but we would like to see him do better here. He also had trouble eating for different people at times. His official diagnosis for all the therapy and to qualify him for various support programs is CP. His muscle tone is Hyper-tonic (over tone) (too much tone in his muscles). He holds his arms stiff and his neck stiff at times, and twists it to the right. We've now had 3 chiro adjustments and it's helped his neck, but I do see we still have a ways to go. He will have chiro care 3 times a week for 4 weeks then we will re-scan him and access where his is. This is also highly recommended by his pediatrician. She recommends that all babies get chiropractic care. He is expected to be "all there" intellectually, but the physically is a question at this point. We won't know the extent of his injury for possibly several years. The best thing we can do is get him all the therapy we can.
William and Micah 2 Month Checkup
2 Month checkup for the babies was Monday. William was 7# 14 oz and Micah was 12# 7 oz. Micah was 75% height and weight, and William was closer to 10th. I'm sorry I forget all the height information from the appt, I'll have to call and update this post tomorrow. The main topic for the appointment was William, and what we are doing for him. She wanted me to take cards and pass them on to the chiropractor, and other therapists and have them all report to her how he's doing with each different treatment, so she can coordinate it all, and be the "ring leader". She was excited we were getting chiropractic care for William and even said that that's the best thing we can do for him at this point, and to keep up the good work.
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."
