Wednesday, May 7, 2008

William myriad of doctors appts.

William's myriad of doctor's appointments:

Monday afternoon we had the followup discharge visit with the Pediatrician, she weighed him, and checked his refluxes and range of motion, and briefly discussed how CP is a matter of therapy, and that's what we need to do is get all the therapy we can.  He weighted 7#8oz (up from 7#5oz on Friday)  And 7#1oz on discharge from the NICU.  She looked at him said he looks pretty good considering, and said we would check weight again at the 2 month appt in a week. She also said to feed him as often as he's hungry.  Try for every 3 hours, and watch his signals.  Also, she said to make follow up appointments with the neurologist for when then need to follow up on him, so I will call them tomorrow. 

Tuesday afternoon we had an appointment with the OT (again the OT and ST people we are seeing are those that worked with the conjoined egyptian twins IPT), who took a history of the birth, and events related, and also a history of his NICU stay, and then worked with him using cranio-sacral therapy.  After the appointment his head (the frontal bone of his skull looked much better.  It had a bad overlap before, and she said that a lot of his brain looked compressed, and that the therapy would allow it to expand on it's own.  Also she mentioned that the frontal bones are right over the motor cortex of the brain and that helping those expand would allow the motor skills to improve.  Also she mentioned that she does no manipulation of the bones, and that the pressure/touch they use is lighter than that of a nickel.  He squirmed a little for the appointment, but fell asleep by the end.  She said she would suggest 6-8 weeks of treatment at this time, and then re-evaluate at that time.  Also, she said he's some of the youngest patients she's treated, usually she get kids when they are 4-5 months old or older because then they are showing some obvious delays, so it's good we are treating him even younger.  

Wednesday morning we went to the new chiropractor that we'll be seeing.  He did a scan of Williams spine and it showed Red/severe disturbances at the very top of his spine and also at the bottom of his spine near his sacrum.  He then adjusted him, a lot of the bones in his skull were out (almost all of them), and then adjusted his neck, and then is lower spine and sacrum. Previous to the chiro visit and part of the reason for the visit William had been holding his head to the right side all the time and when he was in pain or discomfort, and had been doing so for weeks.  I knew he needed chiro care much before he was discharged due to this.  After he adjusted the neck William immediately turned his head to the left and fell asleep.  We will go back on Saturday for another adjustment, but now I'd say his neck is 80% better, and he's eating better after his adjustment. Several of his reflexes after the OT and Chiro treatments are looking much more normal. 

Also, Wednesday the home health nurse came by and checked on William.  Did his vitals and weighted him.  He was 7# 10oz up from 7#8oz on Monday.  She will check on him again on Friday.

PS the underlined words at the top are links to more information.

Our look ahead (PS any help with tommy for appointments would be appreciated.):
Saturday: 9am Chiro appoinment for William (Rob is home to watch Tommy)
Monday: 8am Pediatrician again for twins 2 month checkup 
Tuesday: 1pm William OT and ST appointment (Rob is home to watch Tommy)

Will have a standing appointment on Tuesdays for OT and ST probably around 2 or 3pm.  


Lori said...

This is so amazing to see the power of the "alternative" therapies working on your son. I'm praying that God will give you the strength you need to keep on keeping on.

Anonymous said...

Let's not forget the reason he is alive is because of doctors and modern medicine.

selkiemom said...

I'm glad to hear that William continues to get better. The alternative therapies are making a big difference combined with the Western medicine that has its place, and I'm glad you are doing everything possible to improve him. His potential to recover is so much better when you're supporting those Western treatments since they are usually only partially successful.

Anonymous said...

Weel, let me just say that they sound like wonderful appointments.
As for "anonymous" and their little comment, don't let them offend you or upset you Lydia, they wern't even brave enough to leave a name before they offered up their narrow viewpoint.The reason William is alive is in part due to modern medicine but also due to him having a wonderful mommy who knew what she was doing and gave him the best possible start to his life.

~Lydia~ said...

I fully believe that the reason he is here is because God orchestrated for him to be here. If it weren't for God willing him to be here modern medicine could have done nothing. My heart aches for all the families that don't get the chance to witness a Miracle like I have with William, the families that don't get to hold their baby after he was nearly taken from them. Those who do everything they are suppose to, but still loose their darling child. We will never know this side of heaven why God allows some to stay and takes some home to him. William is truly meant by God to be here and be alive, and that has nothing to do with the tool of Modern Medicine that was used in his life, and to sustain his life.

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."