bobalinga

Yeah, I know its bad grammar!

I can't remember who I told what too so if you ain't interested or
have heard me moan on then delete delete delete.

Celyn started having seizures at 9 weeks old. They turned out to be a
severe form of epilepsy called 'infantile spasms' which lead to
mental retardation. Off she went to hospital to start drugs. Drug
number 1 didn't work. Nor did drug number 2. Drug number 3 was an
injected steroid called ACTH. She went seizure free after the 2nd
injection. Yaaaaaaaaaaaaaaaaay.
She's been on it for 4 weeks now and has bloated up. She cries
constantly and her Blood pressure is sky high. So far she has spent 3
weeks in hospital, once for suspected menigitis and then for BP. She
doesn't smile or babble or do anything really but I've been told by
those that have been through this that babies on ACTH are like this.
We are hoping that when we finish the drug wean (started yesterday)
she will come back to us and develop like a normal 5 month old baby.
It also makes it impossible to judge how bad her cerebral palsy is
although we know all 4 limbs are affected. Despite this she is trying
to gain head control and can suck and swallow!!! All things the doc
said she would never do!

So thats me. Lots of hospital, lots of tears, lots of learning. Have
a great conference and I wish I could be there :-)

Shyrley

Game-Enthusiast

(((Shyrley))) My heart goes out to you and your dd.

Angela
game-enthusiast@...

So thats me. Lots of hospital, lots of tears, lots of learning. Have
a great conference and I wish I could be there :-)

Shyrley


[Non-text portions of this message have been removed]

[email protected]

In a message dated 8/17/2004 4:55:51 PM Eastern Daylight Time,
shyrley.williams@... writes:

Yeah, I know its bad grammar!<<<<

No it's not.


>>>>So thats me. Lots of hospital, lots of tears, lots of learning. Have
a great conference and I wish I could be there :-)<<<<

We're going to miss you this year. Many hugs to you, Heather, and Celyn!

~Kelly






[Non-text portions of this message have been removed]

Kelli Traaseth

Awwww, Shyrley, we'll all miss you, everyone has been commenting on it. :(

My IM hasn't been up, I'll have to get that going again.

Take care and I'll talk to you soon,

Kelli~




---------------------------------
Do you Yahoo!?
Yahoo! Mail - 50x more storage than other providers!

[Non-text portions of this message have been removed]

Mary Gold

>>So thats me. Lots of hospital, lots of tears, lots of learning.

{{{{{{{{Shyrley}}}}}}}

Hugs and belated good wishes on the birth of your daughter. I've been
off this list for awhile (I'm a refugee from the message boards now)
and never got to send proper congrats when she arrived.

I'm so sorry you're going through these difficult times. I'll keep
you all in my heart and send as much good energy your way as I can
muster. I'm sure Celyn brings much joy along with all the other
stuff.

>Have a great conference and I wish I could be there :-)<<<<

I'm missing it too this year! :-(

Oh! Casey still has a picture of Heather from last year's conference
taped to her desk.

Life is good.
~Mary

Elizabeth Hill

**Despite this she is trying
to gain head control and can suck and swallow!!! All things the doc
said she would never do!**

They don't teach fortunetelling in medical school! And if they did, the
professors wouldn't be any more brilliant at reading the future than
Professor Trelawney (from Harry Potter).

Doctors can give you valuable medical information and services, but I
would hate for their gloominess to be a self-fulfilling prophecy. I'm
so glad that you and your daughter are already surpassing their
expectations!

Betsy

Jon and Rue Kream

>>Despite this she is trying
to gain head control and can suck and swallow!!! All things the doc
said she would never do!

**That's great news!

I was just thinking about Heather yesterday. She's so sweet. Tell her to
let me know if she's still interested in jewelry making and needs more
supplies. I always have some floating around :0). ~Rue


[Non-text portions of this message have been removed]

AnneO

--- In [email protected], "bobalinga"
<shyrley.williams@b...> wrote:

***Despite this she is trying to gain head control and can suck and
swallow!!! All things the doc said she would never do! So thats me.
Lots of hospital, lots of tears, lots of learning. Have a great
conference and I wish I could be there :-) Shyrley***

Shyrley ~ I wanted to give you the BIGGEST ((((((((HUG)))))) I could
via cyberspace! You're amazing.

I have a friend who's 16. He was born with a huge brain tumor. The
doctors didn't give him very long to live from birth, but he lived!
Then the doctors told his Mom all the things that Matt wouldn't be
able to do because he's legally blind (has a very small amount of
vision) ~ riding a bike being one of them. Thankfully, his Mom (my
sweet friend) didn't tell Matt ~ he does everything his heart is
drawn to doing, more than most other 16 year old boys do ~ even rides
a bike quite expertly! He was never told he had any limitations, so
he never had anything holding him back.

So today, he's one of the most wonderful 16 year olds we know. He's
sweet, has an incredible girlfriend, and both of them are extremely
talented musicians who have active music careers already, and plan on
continuing studying music in NYC after high school.

So keep that faith in your heart and don't let the doctors define
Celyn's life for her. She'll define it for herself, with your
unconditional love and dedicated parenting ~ and your belief in
unschooling.

I wish I could hug you both for real ~ please know you are in my
thoughts and prayers.

Much Love,
Anne

SHYRLEY WILLIAMS

Awww shucks.
It is the hardest and most painful thing I've ever been through and the moment when the doc said 'your baby is severely brain damaged and we don't think she will live' was the worst moment of my life. But we survive and we make the best of it. Celyn is still Celyn and I love her to bits. The joy she has bought just being herself outweighs the other bits.



Except at 4 am in the morning when she howls and cries! Then I lose all my wisdon ;-)

Shyrley

AnneO <ohman@...> wrote:

Shyrley ~ I wanted to give you the BIGGEST ((((((((HUG)))))) I could
via cyberspace! You're amazing.

I have a friend who's 16. He was born with a huge brain tumor. The
doctors didn't give him very long to live from birth, but he lived!
Then the doctors told his Mom all the things that Matt wouldn't be
able to do because he's legally blind (has a very small amount of
vision) ~ riding a bike being one of them. Thankfully, his Mom (my
sweet friend) didn't tell Matt ~ he does everything his heart is
drawn to doing, more than most other 16 year old boys do ~ even rides
a bike quite expertly! He was never told he had any limitations, so
he never had anything holding him back.

So today, he's one of the most wonderful 16 year olds we know. He's
sweet, has an incredible girlfriend, and both of them are extremely
talented musicians who have active music careers already, and plan on
continuing studying music in NYC after high school.

So keep that faith in your heart and don't let the doctors define
Celyn's life for her. She'll define it for herself, with your
unconditional love and dedicated parenting ~ and your belief in
unschooling.

I wish I could hug you both for real ~ please know you are in my
thoughts and prayers.

Much Love,
Anne



"List Posting Policies" are provided in the files area of this group.

Visit the Unschooling website and message boards: http://www.unschooling.com


Yahoo! Groups SponsorADVERTISEMENT


---------------------------------
Yahoo! Groups Links

To visit your group on the web, go to:
http://groups.yahoo.com/group/UnschoolingDiscussion/

To unsubscribe from this group, send an email to:
[email protected]

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
ALL-NEW Yahoo! Messenger - all new features - even more fun!

[Non-text portions of this message have been removed]

Vijay Berry Owens

My father severly injured his knee in a motorcycle accident when he was
in his early 40s. He was on crutches with a huge cast. The doctors told
him that he'd always need crutches.

Once they took the cast off, he started showing up for his physical
therapy sessions with just a cane. They said, "That's great! But you'll
be using that cane the rest of your life."

Then (after months of swimming and other rehabilitative exercises) he
showed up without the cane. They said, "Wow, you really did better than
we thought, but you'll still never be able to climb stairs, ride a bike,
or do sports."

He didn't bother telling them that he lived in a 6 flight walkup
apartment, and rode his bicycle all over town including to his two jobs:
bartending and teaching Tai Chi. He also cancelled the rest of his
follow-up appointments. He's 64 now, and has no trouble keeping up with
my 13 year old brother and 11 year old sister.

So I tend to say :-P to doctors. In their defense though, maybe they
just don't want to make false promises or get people's hopes up only for
them to be disappointed.

-Vijay
SAHM to Charlotte, 14 months


On Wednesday, August 18, 2004, at 12:33 AM, Elizabeth Hill wrote:

>
> **Despite this she is trying
> to gain head control and can suck and swallow!!! All things the doc
> said she would never do!**
>
> They don't teach fortunetelling in medical school!  And if they did, the
> professors wouldn't be any more brilliant at reading the future than
> Professor Trelawney (from Harry Potter).
>
> Doctors can give you valuable medical information and services, but I
> would hate for their gloominess to be a self-fulfilling prophecy.  I'm
> so glad that you and your daughter are already surpassing their
> expectations!
>
> Betsy
>
>


[Non-text portions of this message have been removed]

[email protected]

In a message dated 8/18/04 9:58:46 AM, vijayowens@... writes:

<< So I tend to say :-P to doctors. In their defense though, maybe they

just don't want to make false promises or get people's hopes up only for

them to be disappointed. >>

I think that's it.
You'll feel strong and lucky if you do better than their predictions.
You'll be pissed off and maybe sue if they give you a happy prediction and it
doesn't come true.

Sandra

Shannon Rizzo

Also consider the challenges doctors have to work with. Many patients do
not follow the doctors' recommendations for recovery and/or self-care.
Sometimes the patients are stubborn (my grandmother not wearing her
hearing aid or my uncle trimming his own dentures and ruining several
pair). Sometimes the patients don't have the willpower (perhaps not
exercising and eating healthy foods despite having had bypass surgery).
One of our former babysitters had diabetes and asthma but still ate donuts
and lived with a smoker.

My mother travels throughout the Delta region setting up clinics in which
the local towns videoconference with specialists in Little Rock. She has
worked in a bone marrow transplant center, has taught nursing, and has
many years of nursing experience prior to that. She can regale us for
hours with tales from the hospital, that are unbelievable.

So maybe the doctors' own expectations are lower because many of their
patients don't follow the protocols necessary to get better. And when a
patient actually follows directions, takes his/her medicine, eats right,
exercises, doesn't overdo it and reinjure him/herself, the doctors are
pleasantly surprised.

Shannon R
(mom to Heather, Isabella, Luke, Jake)

Ren Allen

"Despite this she is trying
to gain head control and can suck and swallow!!! All things the doc
said she would never do!"

Good for her!!
I haven't been here lately, but I wanted to say Hi and best wishes
to little Celyn. If she's anything like her Mum, she'll be fine!:)
A little fighter I bet.
Hang in there.

Ren

Fetteroll

In a message dated 8/18/04 9:58:46 AM, vijayowens@... writes:
>
> So I tend to say :-P to doctors. In their defense though, maybe they
> just don't want to make false promises or get people's hopes up only for
> them to be disappointed.

Recovery might have a lot to do with personality. Some people are determined
to get better and won't accept less. Some people wait for the therapist and
doctors and nature to do what they can.

Joyce