Thursday, March 27, 2008

Occupational Therapist/Speech Therapist

Today (ok yesterday now) morning I met with the occupational therapist, and she showed me how to stretch areas that are tight on him, so they loosen up, and don't remain stiff, some of the same movements my chiro had suggested to encourage the brain pathways to fire on the different sides of the body.  He was a lot better than the last time she saw him with his range of motion (she had stopped by about a week prior), so it's good to have someone on this week that has really seen him improve.  For the grandparents and those who can visit him, what we should be doing is moving the legs and arms at all joints, in all directions to encourage him to flex them, and move them.  Then also hold him in a sitting/upright position and encourage him to flex head forward and back (so he builds muscle tone in his neck).  His neck is one of the floppiest parts, but that's partly because he's so skinny.  She would tickle his tummy to get him to flex the head forward and then reverse and tickle the back.  (One of the great things about baby wearing when I get him home is that it "counts" as Tummy time, so it will also encourage the neck muscles too.)   The occupational therapist will be working with him Monday Wed and Friday usually, in addition to when we are up there we should work with him also.  

Ok as we were finishing up the Speech Therapist came by (she will be working with him 5 days a week Mon-Friday.)  Speech Therapist is responsible for helping with feeding issues and working with him to take a bottle or nurse.  She tried 3 times while I was there to get a gag and did get one really good gag that I saw, but you also have to think that gagging isn't very fun, and I know if someone were constantly cramming a finger down his throat it wouldn't be very enjoyable to have anything in his mouth.  (seems like they are doing this at least 3-4 times a day (nurse, doctor, and therapist)  So then she worked with him with both her finger and paci to get him to curl his tongue around the paci/finger, as he would need to do to take a bottle paci.  I held him after he was done and we didn't do any more with the paci as he was pooped out after all this stimulation and he was also cold.  

Nana came by to hold him while I took a break to pump/feed micah and grab a bite to eat.  

He wan't too receptive to the paci the rest of the afternoon, but I warned him I would be back later tonight and we would work on the paci again.  Which we did this evening, he did great this evening, he held it in his mouth (ok didn't push it out) and seemed to rather enjoy it as I just massaged his mouth with it while he had his feeding and rested on my chest.  Then we worked with all his stretches, he was very loose this evening, and moving even more.  Then I worked with him with a gloved hand so I could tell if he was sucking on the paci at all, and it definitely seemed like he had a week suck, or at a minimum was wrapping his tongue around the finger.  His tongue was still positioned back in the back of this mouth (behind the gums) so we've got a ways to go before he can nurse.  I know from experience with Tommy that the tongue behind the gums doesn't work for nursing and HURTS.  But it would be great if he can start sucking very quickly so he can do a swallow study and start taking a bottle. 

The same doctor today was still telling me that ng tube was dangerous for him, and that he would need a g-tube, and that the swallow study would be dangerous for him too.  And her main reasoning is because he doesn't gag every time they cram the finger down his throat.  I'm still really hoping as I'm seeing lots of progress this past 2 days.  So please keep praying the doctors who spend 5 min with him will see it also, and that William will perform to their requests.

1 comment:

Anonymous said...

since william is your son i am sure he is just practicing in private so that when he is ready he will give a perfect performance to the doctor.

keep the faith!

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."