and Crew.....

[Guest guest]

Hi Everyone,

asked me to forward the following e-mail to the group for her.

She definately needs some prayers...BIG TIME!!!

Subj: Re: Austin having surgery-FINALLY

Date: 5/10/99 12:32:50 PM Central Daylight Time

From: <A HREF= " mailto:SLIN006 " >SLIN006</A>

To: <A HREF= " mailto:Bleaueyes7 " >Bleaueyes7</A>

Hey

Glad to here from you! Glad to here is doing well. Don't know the

exact date yet for Austin, About 5 weeks. She(the dr) is getting some info

together for her own, since she is in the same group as the other(JERK), and

wants to back her dicision, she is only been there for awhile, and will be

going against the other doctors opions-so, as she told me, yes, there is

reason for concern, she had him see the ENT to reevaluate his vocal

cords.Left is paralyzed, right is overworking,airway is nice and open at this

time, which is good and bad. He chokes easy, aspirates, etc., and the tissue

that is suppossed to be like cartilage and cover airway is weak(always has

been) called trachealaryngeal malachia-he has a horrible stridor(since

birth).She also wants me to get letters from his P.T. and O.T. and

teacher(who, all are MORE than glad to do so!) stating his development, and

changes poss and neg, knowing the that the last two months we've been " losing

ground " . Austin learned how to ride a special tricycle last year, and he can

no longer get the strength to ride up a low incline, and stays " out of

breath " .The new Dr. wants these to " back her disicion " since it will

definately be oppossing the othersNSG. But she sounded so possitive, listened

to everything I had to say, nothing like the othee one. I, for now, will put

my trust and faith in God, that he will guide her hands. She has done several

decompressions.We will talk(open floor for questions) in a couple of weeks.

She wants to wait till he gets out for the summer, if he makes it OK till

then. Only a few more weeks. Then as she finishes with him, She is going to

see all my babies-THANK GOD, and evaluate them herself. We already know they

need surgery, too- Angelia does alot of gagging, espessially at night, when

she wakes up.Can't even swallow her own spit. It comes and goes, but we know

it's a sign. And now she has G.E. reflux, which she never had. Her bowels

have never worked, she didn't walk till two(with months of P.T).Keegan is 5

functioning at a 3 yr level and after 20 vivits withP.T., they are denying

any more visits,only 20 a year. He is working with a NMES unit, which seems

to be helping. We don't know if they will let us have it under insurance,

we're doing it at home.He falls all the time, gets choked easy, too. She also

wants to reevaluate my 12 yr old . He has Chiari, but the other

doctor called it (free-floating?), and said- " don't worry about it,he'll be

just fine.I,m hearing,(and reading) he could be in " danger " , too. My oldest

wasn't even checked, because he had a longer neck, and all the rest had shot

necks.Now the topper! The old doctor NEVER has done a Chiari decompression,

he deals with tumors.I'm so glad this new one is here-her name is

Einhause.Good first name!

I have tried to file SSI 2 times, appealing both times. The 2nd time was when

they had the " crack down " , and alot of people that shouldn't have had it got

it taken away, but so did those who shoulv'e. Many people who tried to get

it, were turned down.They(i heard) realized some mistakes were made. I will

try again, especially since this new Dr. may be of help-the other gave info

that hurt us -not helped.So, honey, pray, as it is very powerful.We had MANY

people praying when Austin saw this DR., some the entire time he was there. I

called my Mom by cell phone to let her know the news, and I think every body

in Memphis knew it before I got home!

Well, at the suggestion of several people, and believe it or not, Family

Services on the base(a friend from the past), She sugggested e-mailing talk

show hosts-Rosie, Ophra,Montel....She said Rosie helped a family with quads,

and what I dealing with, ALL put together, is overwhelming-to say the

least.I've trie to get assistance everywhere, and until D-day,I can't, not

saying I will " qualify " then. They look at his income, but they don't look at

his outgo, and what He(spouse) has done to destroy are ability to make it. My

kids go to bed hungry sometimes, yet I don't 'qualify " for food stamps.

Something is wrong here! We soon will have no place to call are house-this

terrifies my autistic child, needless to say my children are worrying about

what they should not have to. He is not looking for a job-no income. No

medical insurance. I don't talk about these to the children, but they " hear " ,

and 2 are old enough to really understand.Well, part of her suggestion was if

enough people also contacted these talkshow hosts, they would realize there

was no hoax here-call my kids Drs.The " medical " issue is what most people

say " this is impossible " .Now throw in what life(and my spouse) has dealt me.

Really sounds unreal. so, theres one IDEA. Have allready e-mailed Rosie. And

I'm going " nuts " trying to get as much medical done as I can before........so

I have so little time. I need God to send me clones of myself, but that sound

scary, so I'd settle for anybody whose already been there-done that, and

could help. I'm not one to ask for help, so if I'm writing it, I must be

getting a little smater in finding a way not to run myself down any farther.

Well, Got to go to an appt., thanks for the mail , sorry to " unload " , but I

know you know we need to do it sometimes, just to stay sane! Do me a favor

and send this to the group, as I'm running late. Thanks for Listening.

I love you.

-tired, but proud Mom of 6, 4 diagnosed with Chiari, all with a

multiude of medical stuff going on, BUT, I REFUSE TO GIVE UP! I have too

many standing behind me, and with me!

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