!

September 1, 1999

I think that is great!! Major success! Makes me happy and I don't even live

there, but this gives us all hope!

Sue

Steve & wrote:

> From: " Steve & " <nagel@...>

>

> We have had a minor success in our town. I am considering it a major

> success story, though. One of our family practice clinics have made the

> decision not to vaccinate any of the children that the see as patients with

> the Hep B vaccine related to safety concerns. They are advising their

> parents not to get them vaccinated with this series. It may seem like

> something small, but this practice has 5 physicians and are well

> established. How exciting is that?!

>

> Digest Number 370

>

> >

> > ---------------------------

March 11, 2009

Carolyn wrote:

> burdened the thought of death..

I think you have hit on something here not just for Dakota but for all

of us.

I knew this young man that had broken his ankle and had to have surgery

to fix it with screws and a plate. Some time after the surgery he was

recovering but I sensed that something emotional needed to be addressed.

He was a religious man and I so I said to him, " that verse that says, a

bone of him shall not be broken? Kind of humbling to know we are no

more special than anybody else. " With that said, he cried.

You don't have to have religion to feel like that. Cosmologist say there

is no center to the universe, but where ever you are the universe is

expanding away from you as if you were the center. I think that is a

cool metaphor for each of us being the center of our universe. Being the

center that you are you are special. Being special, surely the universe

will protect you, its center. You have had a home, parents, food, health

and all you have needed. Then one day you, the center of the universe,

are broken. You understand that you were only the center from your own

point of view. The universe owes you no special favors. Any bad thing

could happen!

But we can can still live and love and give others the feeling that they

are the center of the universe.

notan

March 12, 2009

carolyn- I think you have hit on it exactly. I don't know why I haven't seen it.

I have done the same thing to my own mom throughout this ordeal. thanks for the

mirror...angela

Re: update on dakota

Dear ,

It is so great to hear Dakota is doing well. I can hear the concern for him in

your writing. I hesitate to suggest this, mostly I would suggest possibly seeing

a counselor soon just to reassure yourself. Our family had an issue with a

neighbor over behavior toward our son when he was about 5. I took him to a

counselor several times just to make sure he was well. The neighbor didn't take

their son. Several years later they moved, the happiest day of my life.

My second excuse for butting into your life is that my brother, who is now 53

was always kind of an outsider. One day, about 20 years ago USA Today ran an

article and I suddenly realized what his issue could be.

When you said Dakota had ritualistic behavior and hated to vary, it sounded

like my brother. I preface this by stating I'm no way qualilfied to make any

kind of diagnosis, just here to encourage you to seek answers.

My brother is very very intelligent, has a phd in political theory but

struggles socially, cannot vary his routine without great difficulty, is very

stubborn to change etc.

There is a condition called Asperger's Syndrome that describes it. Varying

symptoms, lack of eye contact, routines, some rigidity, possible lack of self

confidence in some situations, then totally stubborn in other situations. It is

a very large spectrum. Since recognizing these symptoms in my brother, and then

watching others I think I see it in many people. Usually very intelligent, and

usually socially struggling in some way. Maybe many acquaintances but few close

friends with a confidential relationship.

Perhaps, and really only perhaps, the lack of control he has had over the past

years triggered some other kind of issue or maybe there was some underlying

condition that might have been aggravated. I applaud you for seeing it.

For me, when I read that article it explained so much of all the issues I've

had with my brother over the years. Closeness sometimes, but not at all like a

normal brother and sister. Yet, when absolutely needed he totally rose to the

occasion, but with his rules. He took care of our father in his last years about

95% of the time, yet he had to jog every morning at the same time, doctor's

appointments had to be made around his schedule and he wasn't able to really

give the emotional comfort to our father. But he did it without ever complaining

or resentment. My kids were small and I was far away, he is unmarried and during

the winter didn't have that much to do so he was much more able than me. Just

knowing what might be his issue so improved my compassion toward him and changed

my expectations of what he is able to do.

Again, I'm not qualified to make any kind of diagnosis, just presenting one

option. Each child is different, my son is independent and goes full force into

the world. My daughter is secretly independent, but relies on me, even having me

show the hairdresser the picture she wants her hair to look like, and looking to

me to do her talking for her. Yet she is the one that puts her own movies up on

YouTube and just got 10,000 hits about some song some Nick actress is singing.

Yet she is so quiet the playground supervisors don't even know who she is. They

all have quirks. As parents we worry their quirks will develop into problems

later in life, so I understand your concern, and certainly Dakota has been

through a ton of stresses that would greatly exaggerate his quirks.

Others will mention it, I think the wrap has been known to reduce appetites,

just by using up some of the stomach and the stomach is smaller. I'll pass over

my son's appetite to Dakota, if possible. He is like our golden retriever

sniffing for any dropped crumb within reach.

Good luck.

Sandy

>

> i just want to pass along how dakota is doing, post op day 32. the incision

lines are looking great. he still has a little bruising but it is faint. no

signs of infection. we are progressing his diet thought it is still 70% soft. i

do notice that he fills up really fast. i have been doing the small frequent

meal thing, which i believe is better for anyone with or without achalasia. that

said, i would like to see him gain some weight. he's holding at 162lbs on 5'10 " .

he refuses protien drinks of any kind, i'm sure it's mental because it reminds

him of his tube feeding days. speaking of mental, i have noticed that he is more

dependent on us when it come to making choices he use to make independantly.

example, makeup school work. his teachers have all told him he can make up any

test he missed during his study block. yet he came to me and asked me when he

could do this, rather than approaching his teachers and telling them a date and

time. it also seems

as if his schedule is altered in anyway it stresses him out. example, going a

diffrent route to his classes. in order to connect with some of the teachers to

obtain the make up test he would have to go a " diffrent " way. is this

procrastination or has he become ritualistic? out of necessity he become much

more dependent on us this year, at a time when " normal " teenagers are

estblishing there independece. i guess i'm asking how do i move the bird to the

edge of the nest? while instilling confidence in his own decision

making...angela

>

March 12, 2009

notan- if wisdom is an age you must be 1000 years old. thnaks...angela

Re: !