Hello, my name is REA, mi son is 2 1/2 , he had a surgery at 4 days old and has
been on the vent and oxygen since.  The most important that you have to remember
is that everything grows big with love.   You have to love your child more than
ever; he needs you. he needs to hear your voice telling him that you love him
and that he is strong boy you will take care of him.

   On the other hand, you need to learn everything related with the vent and the
tracheotomy. what to do in an emergency and the Ambu bag, that will make the
difference. If you have to go out with him,take an spare of everything never
forget your spare trach. organize yourself make a list of Dr. medications
schedule, emergency list, emergency procedures. organize his room so you and the
caregivers can locate what is needed soon.

   Every person that will help you with the care should know CPR, and emergency
procedures .Also the regular care procedures.

   Been confindent of what are you doing will give you peace of mind.  Take care
of yourself  take a rest everytime you can and you will be succesful.

   God is god






pinkcottoncandy84 <pinkcottoncandy84@...> wrote:
           I'm a new mommy and I had no idea having a premie would be so hard. My
son does have BPD, high blood pressure, rickets, and a few others.
He'll be coming home on a vent and I just need to talk to other mothers
who have children with the same things going on. Help!






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Hi, Miranda....welcome.  My daughter is 12 yo and uses a vent.  Mostly on
CPAP mode.  She has been trached since she was 3 1/2 years old.  She has a
chromosome deletion that causes all her issues.   She is a sweetheart, when
she doesn't have the preteen attitude :)   She was only 3lbs 14oz...they
said she was a preemie because of her size but she was actually 2 weeks
late...she was my 3rd daughter.
joan

HYPERLINK
"http://www.caringbridge.org/visit/hannahgrace95"http://www.caringbridge.org
/visit/hannahgrace95
please visit sign my guestbook,   love hannah grace


    _____

From: ventilatorkids@yahoogroups.com [mailto:ventilatorkids@yahoogroups.com]
On Behalf Of pinkcottoncandy84
Sent: Friday, February 22, 2008 12:45 PM
To: ventilatorkids@yahoogroups.com
Subject: [ventilatorkids] Hi!



I'm a new mommy and I had no idea having a premie would be so hard. My
son does have BPD, high blood pressure, rickets, and a few others.
He'll be coming home on a vent and I just need to talk to other mothers
who have children with the same things going on. Help!






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

--- In ventilatorkids@yahoogroups.com, "Amber" <always_adorable@...>
wrote:
>
> HI everyone my name is Amber, I have a 4 month old son, Landon,
that
> is vent dependent due to central apnea, he has micrognathia which
is
> originally why he had to be trached, he also has a G-J tube because
he
> doesnt know how to swallow. He has hydrocephalus and will be
getting
> his first shunt next week. He also has agenisis of the corpus
> callosum. He has many other little things wrong with him also. He
is
> still in the hospital but finally out of NICU. Our biggest problem
> right now is that our insurance doesnt want to give us in home
> nursing. If anybody wants to chat feel free to e-mail me. Thanks,
> Amber
>
Hi Amber, I'm Miranda, and like you my son is also 4 mos old but
still in the NICU. I've read some of your posts and I just wanted to
tell you I'm def. praying for you guys. My son is on a vent. he's
gong to come home with one, though he doesnt need a g-tube, he has
high blood pressure, rickets, and chronic lung disease or BPD as its
also called. I had him at 26 wks gest. and no one said it was going
to be this hard, of course i dont know anyone who's going through
this personally. Was your son a premie also? When you get a chance
lets email i would love to know how your sons surgery came out! god
bless you and your family,esp your son!

I'm a new mommy and I had no idea having a premie would be so hard. My
son does have BPD, high blood pressure, rickets, and a few others.
He'll be coming home on a vent and I just need to talk to other mothers
who have children with the same things going on. Help!

Hello. Just a reminder, we're a small group but we can offer each other
support. We have new members, so please introduce yourself if you
haven't yet, to let others know who you are.

Cindy
Moderator of ventilatorkids
Yahoo Group for Parents of Children on Ventilators
http://health.groups.yahoo.com/group/ventilatorkids

Hello. I don't have any personal experience with this, but a quick
search on Google brought up this site: http://www.dol.gov/esa/whd/fmla/

In skimming through the FAQ's, I don't see anything about your job
duties being guaranteed, just your employment. I used to work at
Hewlett-Packard, and I vaguely recall a similar situation, someone had
been out for such a long time that their duties had been neglected and
had to be handed over to someone else. My guess is, your employer can
probably do this, and I'm also guessing that it was intended as a slap.
Two weeks doesn't sound like much time to miss - I know corporate execs
who take vacations longer than that.

If you expect to not need any more time off, I'd go to your boss and
explain the situation, explain you don't plan on taking any more time
off, and that you expect to have your job duties returned to you. Try
your boss, and if that doesn't get you anywhere, then your boss's boss.
Or Human Resources, whatever outlets are available to you. Start the
conversations with asking why this has happened, why wasn't it
explained to you beforehand or documented more clearly that this is
what would happen if you followed the rules and used the government-
directed FMLA act, etc. etc. I find that approach tends to be more
successful than a direct confrontation, usually. The idea is to remind
them that you didn't do anything wrong, and try to shame them without
saying so directly.

I doubt you can do anything legally (although someone else may know
better), but there are other ways to get your job back too. Being vocal
and getting others in the workplace to be aware of this injustice (if
it is intentional and not a misunderstanding) can put enough pressure
on your boss to give you your duties back. But again, I'd recommend you
start working with the system first to see if you can get it back
without causing problems. After all, this is your boss you have to deal
with when it's all over.

Good luck. I'll keep you in my prayers.

I have a medical fragile foster child that was placed with me on
9-10.  I have missed work under FMLA to train to bring her home and
missed 2 weeks of work once she came home trying to get my nurses in
order. I have worked for my company for 8 years.  I have no dicipline
actions in my file.  Today my supervisor came to me and advise me that
they are giving my jub duties to someone else because i have been
missing so much work.  I love my job duties and what I do.  There is no
loss in pay or demotion.  However, I am a good employee and do my job
and feel this is a slap in the face.  At no time has anyone came to me
to say you are missing too much work being a foster parent.  We have
FMLA on my job is there not anything out there that states they can not
change your job duties because you are taking FMLA leave.  I would
really appreciate any help in this matter.

HI. My name is Lin.  I am a medical foster parent in KC MO.  We are
currently fostering a 2 year old with Leighs disease.  Leighs is a
genetic degenerate nerological disease.  She has a trachae, vent, cough
assit, feeding tube, pace maker, and catheder.  i am still training and
hope to bring her home in 2 weeks.   All advice is welcomed.  She does
not speak.  Is it normal for a person with a trache and vent to not be
able to speak.  i had a 4 year old with a trachae and he spoke.  you
could not really understand it but he spoke.  He had a speach therapist

Hi Nikki,

My name is Sylvia and I have a 27-month old son, Tyler, who was born
premature at 27 weeks.  He has Bronchopulmonary Dysplasia (BPD),
or "really crappy lungs" as we call it.  He has a trach and is on a
ventilator as well.  I just looked at your webpage.  Zachary is a
very handsome little boy!!  Or should I say, Big Boy!  You have very
similar pictures to ours of Tyler.  The pictures of Zachary with his
NG tube bring back memories.  Tyler has had a g-tube for 1.5 years
now.  He is delayed in eating solids.  If you would like to see
pictures of Tyler, please check him out at www.carepages.com.  The
name of his Care Page is "TylerDriscoll".

It was nice to meet you!
-Sylvia
--- In ventilatorkids@yahoogroups.com, "Nikki" <princessnikki@...>
wrote:
>
> Hey all! I thought I would take a minute to introduce myself to
the
> group. I'm Nikki, mommy to Zachary who is 3 1/2 years old. He
suffered
> a severe brain and C-2 spinal cord injury during labor and
delivery
> resulting in his diaphragms being paralyzed. He's ventilator
dependant
> 24/7 and has been since he was 36 hours old. He has a slew of
other
> issues stemming from the brain injury as well. He is such a
joyous,
> happy child. His smiles are huge and his eyes are bright. He is
such a
> blessing to have as a child. You can learn more by checking out
his
> website, www.zacharybeachley.com
>
> I look forward to getting to know the other families in the group.
>
> Nikki
> Mommy to Zachary
>

Hey all! I thought I would take a minute to introduce myself to the
group. I'm Nikki, mommy to Zachary who is 3 1/2 years old. He suffered
a severe brain and C-2 spinal cord injury during labor and delivery
resulting in his diaphragms being paralyzed. He's ventilator dependant
24/7 and has been since he was 36 hours old. He has a slew of other
issues stemming from the brain injury as well. He is such a joyous,
happy child. His smiles are huge and his eyes are bright. He is such a
blessing to have as a child. You can learn more by checking out his
website, www.zacharybeachley.com

I look forward to getting to know the other families in the group.

Nikki
Mommy to Zachary

This is a welcome to the new members we've had join this group
recently. While it isn't a large group yet, connecting with other moms
in similar situations can form a great support group. Several people
have joined in the past months, please share with us a little about
yourselves.

Again, welcome!
Cindy - Moderator for Ventilator Kids

That is sooooooo AWESOME, Amber!!  I am very happy for you!  I hope you took
lots of pictures of the special day.  I remember the first time we took Tyler
outside -- it was 11 months after he was born!  He never seen the sunlight,
heard the birds sing, feel the wind in his hair, etc until then.  It was very
emotional.  I know you had a wonderful time!  This is just the start of many
more happy days!!

Amber <always_adorable@...> wrote:  Sylvia,
We got to take Landon on a 9 hr pass for Easter, he was so happy it was
the first time since he was born that he left the hospital. He smiled
and laughed and played and was just a happier baby. I cried the whole
car ride back to the hospital, i didnt want to take him back. Then when
i put him back in his hospital bed he started crying. It broke my heart!
But it was the best day we've ever had!!! Thanks for the support. Hope
all is going well for you also
~Amber








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Sylvia,
We got to take Landon on a 9 hr pass for Easter, he was so happy it was
the first time since he was born that he left the hospital. He smiled
and laughed and played and was just a happier baby. I cried the whole
car ride back to the hospital, i didnt want to take him back. Then when
i put him back in his hospital bed he started crying. It broke my heart!
But it was the best day we've ever had!!! Thanks for the support. Hope
all is going well for you also
~Amber

Amber,
   I didn't know you had such a stressful pregnancy or that the docs recommending
terminating it!  That had to be terrible!  Everything you described as feeling,
I can totally relate to.  We were both cheated out of a normal pregnancy and
everything that goes with it:  baby showers (that are filled with joy and not
waiting for your cell phone to ring and it be a call from the NICU); having the
nurses bring us our babies while we were in the Mother/Baby unit; taking our
babies to the local Wal-Mart to get their portraits taken, etc.  (I could go on
& on.)

   I hope everything is proceeding with Landon's discharge plans.  I hope you
have a nice Easter holiday.

   -Sylvia

Amber <always_adorable@...> wrote:
   Sylvia,
I always get jealous and feel like I lost out when I see people who are
having healthy babies, I cant help but feel that its not fair. I know
Landon is still little and will probably grow out of a lot of his
issues but it's hard. When i think about his birth i cry, i missed out
on holding my baby after he was born, taking him to my room after
delivery, hearing him cry, taking him home, etc. I missed out on a
normal pregnancy, i didnt get to enjoy it like i wanted, i spent the
whole time scared and going to doctor appts 2 x week, worrying how long
it was since i felt him move, worrying that maybe i was being selfish
for bring this disabled child into the world. Wondering if maybe I
should have listened to the docs and terminated, feeling guilty for
even thinking that i made the wrong mistake! I think i'm always going
to feel sad about what I lost out on but then i feel guilty because I
feel like i should be more grateful to have him. No matter what at
least he's here! Thanx for the prayers!!!







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Sylvia,
I always get jealous and feel like I lost out when I see people who are
having healthy babies, I cant help but feel that its not fair. I know
Landon is still little and will probably grow out of a lot of his
issues but it's hard. When i think about his birth i cry, i missed out
on holding my baby after he was born, taking him to my room after
delivery, hearing him cry, taking him home, etc. I missed out on a
normal pregnancy, i didnt get to enjoy it like i wanted, i spent the
whole time scared and going to doctor appts 2 x week, worrying how long
it was since i felt him move, worrying that maybe i was being selfish
for bring this disabled child into the world. Wondering if maybe I
should have listened to the docs and terminated, feeling guilty for
even thinking that i made the wrong mistake! I think i'm always going
to feel sad about what I lost out on but then i feel guilty because I
feel like i should be more grateful to have him. No matter what at
least he's here! Thanx for the prayers!!!

Hi,
   We saw similar situations at the Univ of Michigan as well.  When you hear
about people coming from the South, Minnesota, etc. just to see your doctors,
you can't help but feel a little more confident with their knowledge &
expertise.  That's good news about Landon coming home soon -- I'll pray for a
speedy homecoming.

   I just received an email from a friend of mine letting me know that she is
pregnant with baby #2.  Her first baby was born on the same day as Tyler -- they
are four minutes apart and we were in the same hospital.  Of course, hers was a
happy story where everything went as planned and she had a healthy, full-term
baby boy.  And now, her second baby is due exactly two years after her first was
born.  Some things come so easily to some people.  Am I the only one who still
can't fight feelings of resentment and jealously when hearing this type of news?
I thought I was over feeling sorry for myself , but her email really knocked me
for a loop tonight....

Amber <always_adorable@...> wrote:
   Sylvia,
It takes about an hour but it would take us 2 hrs to go to
Indianapolis. They have the best doctors in Cincy, one of our friends
comes from Georgia to see our pulmonary docs. We have also met a boy
from Israel that was seeing the ENTs here. Seeing people from all over
the world come to see ur docs makes u have even more confident in them.
We dont like being an hour away but we dont want to move to Cincy so
well stay where we are. The docs think maybe Landon will finally get to
go home next week or the following so we r very hopeful.% months is
long enough!
~Amber~









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Sylvia,
It takes about an hour but it would take us 2 hrs to go to
Indianapolis. They have the best doctors in Cincy, one of our friends
comes from Georgia to see our pulmonary docs. We have also met a boy
from Israel that was seeing the ENTs here. Seeing people from all over
the world come to see ur docs makes u have even more confident in them.
We dont like being an hour away but we dont want to move to Cincy so
well stay where we are. The docs think maybe Landon will finally get to
go home next week or the following so we r very hopeful.% months is
long enough!
~Amber~

Amber,
   It sounds like you know exactly how I feel!  It was so hard going through IVF
and then watching the news to see these idiot women who a) burned their baby in
the bathtub, b) left her baby in the car during 90 degree days while she is in
the beauty salon getting her haircut; or c) delivered a baby in a restroom
because she didn't even know that she was pregnant!   You are correct, however,
our little guys are miracles and we've been blessed to witnessed a miracle
first-hand -- not many people can say that.

   Yes, we take Tyler to the University of Michigan Hospital.  It's a teaching
hospital, which I'm not crazy about.  But there are so many medical
opportunities for him there..and we are lucky that we only live 30 minutes away.
Does it take you long to get to the hospital in Cinci?

   -Sylvia

Amber <always_adorable@...> wrote:
   ---Sylvia,
I completely hear u on the drug addict thing, my sister is a heroin
addict had 2 kids and didnt want either of them! my husband and i
didnt have any trouble conceiveing Landon but we waited 4 years after
getting married to have him. We both work and try to live a decent
life and I know we were given this miracle for a reason, but it does
seem unfair for those of us who try to live our lives the right way.
Good luck getting Tyler transitioned.. The laptop vents are so great.
We live in Indiana but go to Cincinnati's Children's Hospital in
Ohio. Do u go to a hospital in Michigan?
~Amber~






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

---Sylvia,
  I completely hear u on the drug addict thing, my sister is a heroin
addict had 2 kids and didnt want either of them! my husband and i
didnt have any trouble conceiveing Landon but we waited 4 years after
getting married to have him. We both work and try to live a decent
life and I know we were given this miracle for a reason, but it does
seem unfair for those of us who try to live our lives the right way.
Good luck getting Tyler transitioned.. The laptop vents are so great.
We live in Indiana but go to Cincinnati's Children's Hospital in
Ohio. Do u go to a hospital in Michigan?
~Amber~

Hi.  Thanks, Mark, for the warm welcome.

   Yes, Tyler can get outside, but right now it's really a pain-in-the-you know
what.  He's on a large, out-dated ventilator (the T-Bird Legacy).  This vent
weighs 40 pounds alone -- this doesn't count the battery pack, the special
"kid-kart", the suction machine, etc.  His vent team is trying to transition him
to the Lap Top Vent which will be easier for all of us.  We live in Michigan. 
Unfortunately when we were finally able to take Tyler home, it was in the start
of winter.  He received monthly Synergis shots for the prevention of RSV.  His
last shot was this month.  We hope to take him outside more once the weather
warms up.

   Amber -- I totally appreciate your frustration!  Sometimes it definitely
doesn't seem fair that the "system" doesn't help couples who actually are
employeed and planned their family!  Tyler was conceived only after years of IVF
treatments.  I often thought maybe I should have become a crack addict and claim
welfare in order to have a child -- you always hear on the news about woman like
that who can't stop spitting out the babies!  (sorry -- I just needed to vent a
little.)

   This is my time joining an online group.  Thanks for the nice welcome!

   -Sylvia

Amber <always_adorable@...> wrote:
   We have already been on the news and in the paper - no results! We
jusy keep praying  that he will get the help he needs. He cant stay
in the hospital forever
~Amber~
-

-- In ventilatorkids@yahoogroups.com, samjames@... wrote:
>
> yes it does seem like that sometimes, Amber.  i hope things work
out
> for you.  is there any opportunity to contact a newspaper or
> congressperson in your area to try to bring attention to the
matter.
> as goofy as it sounds sometimes some recognition can go a long way
>
> best regards
>
> mark
>
> ps welcome to the group, Sylvia.  are you able to get Tyler
outside
> at all?  Which state do you live in?
>
> take care
>
>





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We have already been on the news and in the paper - no results! We
jusy keep praying  that he will get the help he needs. He cant stay
in the hospital forever
~Amber~
-

-- In ventilatorkids@yahoogroups.com, samjames@... wrote:
>
> yes it does seem like that sometimes, Amber.  i hope things work
out
> for you.  is there any opportunity to contact a newspaper or
> congressperson in your area to try to bring attention to the
matter.
> as goofy as it sounds sometimes some recognition can go a long way
>
> best regards
>
> mark
>
> ps welcome to the group, Sylvia.  are you able to get Tyler
outside
> at all?  Which state do you live in?
>
> take care
>
>

yes it does seem like that sometimes, Amber.  i hope things work out
for you.  is there any opportunity to contact a newspaper or
congressperson in your area to try to bring attention to the matter.
as goofy as it sounds sometimes some recognition can go a long way

best regards

mark

ps welcome to the group, Sylvia.  are you able to get Tyler outside
at all?  Which state do you live in?

take care


On Apr 6, 2006, at 7:06 PM, Amber wrote:

> ---We have fought with our insurance, have provided letters and
> letters of medical necessity and have been told by our insurance that
> they "dont doubt he needs a nurse but your plan doesnt cover it" We
> had to fight for the 30 days they are giving us, it took us 3 months
> of letters and calls to get that. We make too much money for medicaid
> so if we dont get the waiver soon, when we go home we will get
> readmmited if the insurance doesnt give in. It sucks to do the right
> thing by working and being married and waiting to have kids because it
> seems the system punishes u for it.
> ~Amber~
>
>
>
>
>
>
>
> YAHOO! GROUPS LINKS
>
>  Visit your group "ventilatorkids" on the web.
>
>  To unsubscribe from this group, send an email to:
>  ventilatorkids-unsubscribe@yahoogroups.com
>
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>



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

---We have fought with our insurance, have provided letters and
letters of medical necessity and have been told by our insurance that
they "dont doubt he needs a nurse but your plan doesnt cover it" We
had to fight for the 30 days they are giving us, it took us 3 months
of letters and calls to get that. We make too much money for medicaid
so if we dont get the waiver soon, when we go home we will get
readmmited if the insurance doesnt give in. It sucks to do the right
thing by working and being married and waiting to have kids because it
seems the system punishes u for it.
~Amber~

Hello everyone,

My name is Sylvia and I'm new to this group.  My son, Tyler, was born
on Nov. 17, 2004, at 27 weeks weighing only 1 lb 10 oz.  He remained in
the NICU for 10 months and then then 2 months in the hospital's "Stable
Vent Unit."  Tyler got his trach on April 22, 2005.  He also has a g-
tube.  We are fortunate enough to have our insurance approve 16 hours a
day for home nursing.  In order to get this, however, our discharge
planner from the hospital wrote a letter of "medical necessity" that
was sent to our insurance company.  This letter is what got us the
approval for the home nursing.  Amber -- did anyone provide you with
such a letter?

Landon is finally doing pretty good, he is having another study done to
see if maybe he just needs cpap at night, which would be wonderful. We
might be getting to go home soon which is also exciting.
~Amber~

Our insurance is giving us 30 days of nursing and that is it. we tried
to get medicaid but we make too much money. SO we are on a waiver
waiting list which can take years, so if we dont get the waiver and
our insurance wont give us more nursing, we have been told he will
have to go to a nursing home until we can get the waiver. We live in
IN but Landon is in Cincinnati Children's in OH.
`Amber

Hi Amber,
   Hang in there with the nursing situation. The system just doesn't understand
how difficult it is for parents of children with medical problems. My daughter
is almost 26 months old now. Actually she is my foster daughter but I've been
with her from the beginning so in my heart she is mine.  I can't adopt her
because I will be cut off from the financial assistance so I understand your
frustrations.  My daughter spent the first 15 months in the hospital.  She was
premature weighing 1.5 lbs at birth. After her surgery for her G tube she went
downhill. She quit breathing which required her to be trached. This was at 3
months of age and has been vent dependent ever since. She has chronic lung
disease which has caused stress on her heart, kidneys and brain. My problem with
the nursing situation is I live in a rural area and can't get nurses to come to
my house. I am approved for 24 hour care but I'm lucky to have a nurse 1 day a
week.  If it weren't for the friends(nurses) I made up at
  the hospital I wouldn't even have that.  My nurses are the ones that took care
of her while at the hospital.  We bonded and they come to my house on their time
off.  If there is anything I can do just ask.  I have 3 other children at home
and its been a challenge.  Take care and good luck.

Amber <always_adorable@...> wrote:
   HI everyone my name is Amber, I have a 4 month old son, Landon, that
is vent dependent due to central apnea, he has micrognathia which is
originally why he had to be trached, he also has a G-J tube because he
doesnt know how to swallow. He has hydrocephalus and will be getting
his first shunt next week. He also has agenisis of the corpus
callosum. He has many other little things wrong with him also. He is
still in the hospital but finally out of NICU. Our biggest problem
right now is that our insurance doesnt want to give us in home
nursing. If anybody wants to chat feel free to e-mail me. Thanks,
Amber







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

hi amber and welcome to the group.

it sounds like your little fella is keeping you busy and we wish you
the best of luck.

where do you live and which hospital are you in?

did you get any help from social services there as regards to finding
nursing help at home?

caring for him by yourself will be a huge undertaking.  do you have
any options?  my son lived at home but we had some insurance money
with which to hire nursing help

best regards

mark




On Mar 4, 2006, at 9:53 AM, Amber wrote:

> HI everyone my name is Amber, I have a 4 month old son, Landon, that
> is vent dependent due to central apnea, he has micrognathia which is
> originally why he had to be trached, he also has a G-J tube because he
> doesnt know how to swallow. He has hydrocephalus and will be getting
> his first shunt next week. He also has agenisis of the corpus
> callosum. He has many other little things wrong with him also. He is
> still in the hospital but finally out of NICU. Our biggest problem
> right now is that our insurance doesnt want to give us in home
> nursing. If anybody wants to chat feel free to e-mail me. Thanks,
> Amber
>
>
>
>
>
>
>
> SPONSORED LINKS
> Article health wellness Center for health and wellness Health and
> wellness
> Health and wellness program Health wellness product Health and
> wellness job
>
> YAHOO! GROUPS LINKS
>
>  Visit your group "ventilatorkids" on the web.
>
>  To unsubscribe from this group, send an email to:
>  ventilatorkids-unsubscribe@yahoogroups.com
>
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>



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

HI everyone my name is Amber, I have a 4 month old son, Landon, that
is vent dependent due to central apnea, he has micrognathia which is
originally why he had to be trached, he also has a G-J tube because he
doesnt know how to swallow. He has hydrocephalus and will be getting
his first shunt next week. He also has agenisis of the corpus
callosum. He has many other little things wrong with him also. He is
still in the hospital but finally out of NICU. Our biggest problem
right now is that our insurance doesnt want to give us in home
nursing. If anybody wants to chat feel free to e-mail me. Thanks,
Amber

Welcome to the Parents of Children on Ventilators group. This group is
intended to be a place for parents to meet, share questions and
stories, and generally provide encouragement for one another. There are
several people who have joined now. Don't be shy! Post a message and
share your story. Once we get it started, I'm certain you'll find
support from each other...

- Cindy Reeves
Moderator for ventilatorkids yahoo group