Re: Fw: [Fw: Silver Syndrome]

[Guest guest]

Dear Danna,

All I can say is WOW! She is some kind of dedicated lady! I just read from

Jodi about how Dr.H helped to treat Max in the hospital all the way from

Hawaii.I have to say I have been really feeling discouraged today,though.I

want so much to find out whether or not Blair does or does not have a growth

disorder,so that important decisions can be made for her care.However,I'm

afraid my zeal is not shared by Blair's mother. Some of you may know that

Blair's mom and dad were never married and the mom has custody.(Her Dad is my

son)She has become just totally sick of all the doctor's visits and the

testing.I really am not sure that having a diagnosis is important to her.We

have offered to SOMEHOW take them to New York if necessary.I do get along

with the mother and we see Blair very frequently.She is expecting a new baby

ANYTIME now,and I know she is going to feel even more overwhelmed.(Not by my

son)I offered to take Blair to her Endo appointment next week if the mom is

not able to in order for her not to cancel the appointment.She and my son

argued on the telephone today and she basically said that if she wasn't able

to take her,then no one else was going to.All I can do is place it in God's

hands and pray that it will all work out for Blair.I'm sorry I just had to

vent a little.Thank you so much for the helpful information!!!

Grandma Ann

[Guest guest]

Dear Ann,

Is Blair on pediasure, is her mom giving her high cal foods? It

sounds as though this girl is very stressed and probably nervous about her

new baby's health. Could it be possible that maybe she is burned out? I

know that I've felt overwhelmed with all the appointments and no answers. I

have even expressed that to some of 's doctors and surprisingly they

are very empathetic. I don't know the nature of your son's & Blair's mom's

relationship but maybe she needs some time out. When Josh was first born my

mom did all the research for me ( To this day she remains bitter) but I

wasn't ready to hear everything just then. Now I crave knowledge for Josh's

disorder but I just needed some time off to enjoy him for what he was. You

have said you have a good relationship with this girl so maybe give her a

little time. Not months, a week or so. I would wait until she really needs

help (when the new baby comes.) Chances are she feels overwhelmed &

helpless regarding Blair's health, not to mention hormonal! I don't know

hoe long Blair has waited for this endo appointment or how long it would

take to reschedule but it sounds like she's getting defensive and maybe one

missed appointment is better then future problems. Feel free to tell me I'm

meddling and to be quiet if you want. I know you love your granddaughter

very much and want only the best for her but her mom might be at her

pregnancy induced breaking point!! Is this girl on her own with the second

child?

I hope things work out!

- Mom of (13mons) & (3yrs)

[Guest guest]

Grandma Ann,

Sounds like a very difficult situation for you, I'm sure Blaire's parents are

doing the best they can. And I'm sure they really do appreciate how much you

care about her!! I hope Blair doesn't miss her endo appt. - regardless of

who takes her, good luck,

, mom to Jes,

[Guest guest]

Hi Ann,

I feel like I was once like your granddaughters mom, for the longest I

thought why mess with something I have no control or say in anyway. Until I

found this support group I really didn't know what options are out there for

. I spoke with our family dr.about growth hormones again when we had

s cast changed and again I felt like he was assuming that we couldn't

afford to provide GH treatment for . He kept mentioning how older

folks in California (no offense to the east coasters) were using GH as a

fountain of youth and causing the cost to shy rocket.

Well we can't afford much of anything right now, but I'm sure if he

would be better-off with growth hormones we could find a way. I do have in

the back of my mind a plan that when I finish school and am gainfully

employed again in a lots better paying job than the one I had before money

wont be a problem. I always dreamed BIG.

I did sent several e-mail request to different Endocrinologist and one

referred me back to s, so maybe I wasn't so far off base after

all. will have a post- op visit on the 30th of March and I'm going to

get on the phone and see If I can't get another App. with her for the same

day.

As far as your grand-baby's appointments go I'll pray her mom comes

around, surely she wont let a argument with Blairs dad stand in the way of

getting medical treatment. But on the other hand anger doesn't often

fueled a healthy state of mind.

I guess I've let my thought ramble long enough. I'll write later and

let you know how things are going. Please keep me posted on Blairs next

Dr.'s visit.

Danna

Re: Fw: [Fw: Silver Syndrome]

> From: AKnight322@...

>

> Dear Danna,

> All I can say is WOW! She is some kind of dedicated lady! I just read from

> Jodi about how Dr.H helped to treat Max in the hospital all the way from

> Hawaii.I have to say I have been really feeling discouraged today,though.I

> want so much to find out whether or not Blair does or does not have a

growth

> disorder,so that important decisions can be made for her care.However,I'm

> afraid my zeal is not shared by Blair's mother. Some of you may know that

> Blair's mom and dad were never married and the mom has custody.(Her Dad is

my

> son)She has become just totally sick of all the doctor's visits and the

> testing.I really am not sure that having a diagnosis is important to

her.We

> have offered to SOMEHOW take them to New York if necessary.I do get along

> with the mother and we see Blair very frequently.She is expecting a new

baby

> ANYTIME now,and I know she is going to feel even more overwhelmed.(Not by

my

> son)I offered to take Blair to her Endo appointment next week if the mom

is

> not able to in order for her not to cancel the appointment.She and my son

> argued on the telephone today and she basically said that if she wasn't

able

> to take her,then no one else was going to.All I can do is place it in

God's

> hands and pray that it will all work out for Blair.I'm sorry I just had to

> vent a little.Thank you so much for the helpful information!!!

> Grandma Ann

>

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

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>

>

[Guest guest]

In a message dated 3/14/00 5:38:27 AM Pacific Standard Time,

danna5@... writes:

<<

Hi Ann,

I feel like I was once like your granddaughters mom, for the longest I

thought why mess with something I have no control or say in anyway. Until I

found this support group >>

Dear Danna,

Your plan makes a lot of sense, or maybe you can even follow Dr. H's

suggestions on how you could afford a trip to New York-not to say that

Dr.s is not good.Blair's Mom also has a stubborn streak, and she has

already made the comment to me before that she thinks all the doctors are

" quacks " .I just keep encouraging her though.She also has the fear of Child

Welfare getting involved because she was reported once for not following up

on something.(By a doctor,not by any of us) She did call us today to let us

know that Blair had to go in to see her regular ped. She has some sort of

upper respiratory illness again.She spoke to me and my son and everything was

very civil. I actually like this girl, even though she has been deceptive on

more than one occasion. She gave good news too concerning Blair's weight

gain. She reports that she has gained 1 pound in the past 2 weeks. (I'll have

to admit that I will do my own wt. check this weekend,before I'll believe

it.Ha!Ha!) Thanks,Danna. Hope is mending well.

Grandma Ann

[Guest guest]

,

Thanks a bunch. So do I. We did talk to her Mom again today. Her cervix is

beginning to dilate a litlle, so who knows?

Ann

[Guest guest]

In a message dated 3/14/00 12:00:22 AM Pacific Standard Time,

heatherweso@... writes:

<<

Dear Ann,

Is Blair on pediasure, is her mom giving her high cal foods? It

sounds as though this girl is very stressed and probably nervous about her

new baby's health. Could it be possible that maybe she is burned out? >>

Dear ,

Thank you for your interest in our situation. I am quite sure Blair's mom is

really stressed out, for all kinds of reasons! She is married to the father

of the baby she is about to deliver. I'm not sure how great their

relationship is though. By the way, my son was there for her in every way he

could be when she was carrying Blair. He wanted very much for them to marry,

but that never happened. We do communicate frequently and get to see Blair

often. In fact her mom called today to let us know Blair saw her ped.

today-she has another URI. I'm afraid she lacks the maturity yet to realize

how important it is for her to know what is wrong with Blair. I also think

that her family pretty much think like those other people we hear about who

say, " Oh,she's just going to be petite. " You know what I mean? We're keeping

the lines of communication open though.Thanks for your care and advice.

Grandma Ann

Oh, and no she is not on Pediasure. In fact she just recently came off of

Nutramigen and started on whole milk. She has been encouraged to add powdered

milk to it, and she has been asked to try to add extra fat to her food with

veg. oil,etc. She says she is doing that.

[Guest guest]

Dear Grandma Ann,

I'm very sorry if I offended you in any way. I'm sorry to hear

Blair has an URI. I was surprised to hear that she's gone from Nutramigen

to whole milk! That's wonderful!! my oldest was also on nutramigen and

never could tolerate milk even today he refuses to drink it. Hopefully she

will get better soon- it seems whenever Josh gets sick he doesn't eat as

well and well, you know the story. Does Blair have frequent ear infections?

Josh is on his 4th this year. I read somewhere that because of their small

facial anatomy they are more prone to ear infections. take care

- Mom of (13mons) & (3yrs)