W*E*L*C*O*M*E**W*E*N*D*Y*

[Guest guest]

First ... pretend you don't see me =o) I'm not supposed to be here... but

i snuck out from under my keeper's care and here i am =o) *giggle*

, I have a son somewhat like your Matty only my sons name is Andy.

He was shaken at age 3 weeks and his brain turned to mush. He also has a

g-tube, no iv's right now - but usually at least 2-3 times a month or 3

of 4 weeks a month - for infections - usually due to the fact he

aspirated something. we adopted him when he was 2 and not expected to

live until 5 and he turned 6 this past April 1st. I know the strain you

are under having a total care kid! As for the shower... LoL I haven't had

one for 3 days (partly cuz my hot water heater busted and I had to buy a

new one... Whoopee!! and because i was either taking care of Andy or at

the doc for me)

Aisha, our mother hen (and no ish, i am a figment of your imagination...

i am really in bed with my leg up) is wonderful and I think you'll get

lot of support here - I might also recommend another group - in my

opinion one can NEVER have too much support! That group is:

<TLC4MomsofDsabldKidsegroups>

gotta go before i'm missed - i'm supposed to be on bedrest = but i have

an addiction to email =o)

janalise

At 10:59 PM 4/13/00 -0700, you wrote:

Hello to everyone. Let me first start out by

saying that I don't know if

I've found the right place for me or not, but I'm going to give it a

shot. Please accept my apologies in advance if this post runs a bit

long...

I'm here because my 15 month old son, , is a very sick little

boy, and truly, it does SUCK!! A little background on Matty (I'll

make

it as brief as possible, but he is a complicated child...)

has several diseases. He has Pearson's Syndrome (a very very

rare mitochondrial disorder), Kearns-Sayre Syndrome (a second

mitochondrial disorder, not quite as rare but still uncommon),

Reactive

Airway Disease (almost like asthma, but not quite), Fanconi Syndrome

(a

kidney disorder), and Periventricular Leukomalasia (death of brain

tissue).

I know from all of this that it sounds as though I am making it

up...no

child could ever be this sick, right?? But I promise you that all of

it

is real, he does suffer from all of those diseases...I would never

wish

this on anyone, let alone my own child.

was sick from birth, but our pediatrician at that time

wouldn't

believe me...so testing didn't begin until Matty was 3 months old and

in

full bone marrow failure. His first diagnosis, Pearson's Syndrome,

came

at the age of 5 1/2 months, and it's been a full -fledged fight for

his

life since then. (In the hopes of keeping this post to a reasonable

length, I won't go into specifics about his diseases now, but I am

more

than willing to answer any and all questions).

currently is on a 24 hour IV hookup at home, he has a

central

line and a g-tube. He takes 5 IV medications every day, at least 7

oral

(or g-tube) meds everyday, and 2 inhaled meds every day (several times

a

day).

is my 4th child, 3 of whom are living. I have a 7 year old

daughter, Adrienne, and a 2 year old daughter, Grace. My first son,

, was premature and died within minutes after birth.

Before got sick, I worked full time outside of the home, and

also went to school pursuing a major in elementary education. Now I

barely have time to shower every day, let alone work or go to

school!!

As I said in the beginning of this post, I'm not sure if this is the

right place for me. I'm on a couple of other onelists related

specifically to 's conditions, but I have found that although

they are a wealth of medical and practical advice, the personal

aspect

is missing. That's what I'm looking for now, someplace where people

can

understand what it's like to be sick, or to care for someone who is

ill.

Thank you again for your time and patience with me!!

,

Columbus, Indiana

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“There will always be people who are better off and worse off then you. This makes no difference to how you are feeling. You are the only one who feels as you do, and you have every right to be negative or upset when you are ill, injured, disabled, or caring for someone who is. No one deserves being sick, it is not fair.” - Aisha.

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