Actually, my name is Michelle (Joyce was my maiden name). My little guy
will be 7 weeks old tomorrow. His cardiologist is Dr. Gleason, we go to
the Exton office of CHOP. His pediatrician is Kids First of West
Chester.


--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote:
>
> Hi joyce! I just wanted to welcome you to our group! You officially
> have the youngest heart baby in our group. Congrats on the new baby!!
> We have all been through a lot with our heart babies and are here to
> answer any questions you have and support you in any way we can.
>    Can I ask what Cardiology group you see and what pediatrician
> practice you go to?
>    Carol
>

--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote:
>
> Hi joyce! I just wanted to welcome you to our group! You officially
> have the youngest heart baby in our group. Congrats on the new baby!!
> We have all been through a lot with our heart babies and are here to
> answer any questions you have and support you in any way we can.
>    Can I ask what Cardiology group you see and what pediatrician
> practice you go to?
>    Carol
>


My name is not Joyce It's Debbie and my daughter is 8

Has anyone else battled the flu with their heart child yet? The flu
sent Adam (6) to the hospital for 4 days by ambulance 2 weeks ago. His
saturation was 68 when I got to the pediatrician's office. He spent 4
days in the PIMC at Hershey on IV fluid and oxygen. We all ahd the flu
shot too. UGH.
    Hope everyone else is staying healthy this winter.
    Please post and give us an update on your heart child!
    Carol

Hi joyce! I just wanted to welcome you to our group! You officially
have the youngest heart baby in our group. Congrats on the new baby!!
We have all been through a lot with our heart babies and are here to
answer any questions you have and support you in any way we can.
    Can I ask what Cardiology group you see and what pediatrician
practice you go to?
    Carol

Even though our group doesn't seem very active I want to pass along
some info to you all.  This past week one of our members, Heather
(georgiagirlfrompa) lost her little boy.  Aiden was only 10 1/2
months old and was a remarkable little boy.  He was born with HLHS
and ectopia cordis- his heart growing nearly entirely outside of his
body. Please keep Heather and her family in your prayers.  Also for
anyone interested his memorial service is Monday at Noon at Calvary
Chapel of Philadelphia (www.ccphilly.org).  You can also visit his
carepage (page name is AidenScottLane)

Those who wish to send an actual card may do so by mailing one to
Heather Hardy
P.O. Box 598
Boiling Springs, PA 17007,

and memorial contributions will be accepted by
Aiden's Heart Fund
Grace United Methodist Church
46 West South Street
Carlisle, PA 17013.

Heather and her family also requested sending a card or note of
thanks for the care the staff gave Aiden, together with a word of
encouragement and appreciation for all they do on a daily basis.
Simply send them to:
Saint Christopher's Hospital for Children
CCU Staff- C/O Aiden
Erie Avenue at Front Street
Philadelphia, PA 19134

What appropriate timing.  Austin had his cath done Thursday and they
put a stent in his left pulmonary artery.  All went well! Dr. Weber
indicated that this probably bought him some time until he needs his
valve put in the pulmonary artery =)Thanks so much for your advice.
It was so helpful!
Andee
--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote:
>
> http://ca.news.yahoo.com/s/afp/070902/health/health_science_heart_1
>
> here is an article I found in an email from a girl from the national
> support group and I wanted to make sure our local group got a chance
to
> see this. It is about valves.
>

http://ca.news.yahoo.com/s/afp/070902/health/health_science_heart_1

here is an article I found in an email from a girl from the national
support group and I wanted to make sure our local group got a chance to
see this. It is about valves.

In a message dated 8/22/2007 4:50:43 PM Eastern Daylight Time, debjm31@yahoo.com writes:

She actually just got back from a week at heart camp

can you tell me more about this?

---

Get a sneak peek of the all-new AOL.com.

In a message dated 8/22/2007 4:50:43 PM Eastern Daylight Time, debjm31@yahoo.com writes:

She actually just got back from a week at heart camp

can you tell me more about this?

---

Get a sneak peek of the all-new AOL.com.

Well, on Monday, I will be sending my little heart boy off to
kindergarten. I remember the early days after his birth wondering if he
would even survive and now he is off to school!!! Adam has some
physical issue due to a stroke he suffered before he was 3 months old
so I worry about that but I think in general he will do well. Anyone
else sending their heart abby to school yet?
Carol

Well, on Monday, I will be sending my little heart boy off to
kindergarten. I remember the early days after his birth wondering if he
would even survive and now he is off to school!!! Adam has some
physical issue due to a stroke he suffered before he was 3 months old
so I worry about that but I think in general he will do well. Anyone
else sending their heart abby to school yet?
   Carol

As long as you dont have a lapse in insurance coverage you should be
able to get insurance without a problem. My kids have my husband's
insurance and also medical assistance we're on something called the
HIPP Family Plan(something like that it's called) The kids arent on
full medicaid like they used too, it stinks but least they have
coverage, the only thing that stinks is when we have a co pay for the
pediatrician's office since they dont accept the access card.

--- In mlhsepa@yahoogroups.com, Ann-Jeanette and Rudy Vasko
<ajrvasko@...> wrote:
>
> Hey everyone,
>
>   I'm having a horrid day.  I just found out I'm going to be layed
off next month from my biotech. Actually half of the company was just
let go.  Moving on....
>
>   My question is about insurance.  Ella (and everyone in the
family) is under my insurance.  What have people done when their
family was about to loose their insurance?  I know there are state
programs for children.  Is that enough to consider that you have had
continuous coverage so that we won't have to deal with the pre-
existing condition "label" for Ella?
>
>   All input is welcome.
>
>   Thanks,
>
>   Ann-Jeanette
>   Mom to Christian, Jenna and Ella (HLHS)
>
>
> ---------------------------------
> Building a website is a piece of cake.
> Yahoo! Small Business gives you all the tools to get online.
>

http://www.usatoday.com/news/health/2007-05-07-used-heart_N.htm?csp=34

http://www.reuters.com/article/healthNews/idUSN1734873020070522

Glad to hear austin did well at his appointment!!! We used to have
Hershey cards but since our insurance switched we switched to CHOP and
Im sorta glad we did or I wouldve never found out about the genetic
conditions my kids have. We always say Kylie will have a "Penn
State/Hershey" heart though :)

--- In mlhsepa@yahoogroups.com, "Andee" <andeelee@...> wrote:
>
> Hello,
> I was hoping you gals might be able to help me.  Austin has his visit
> with the cardiologist next Tuesday.  These past few months with
> monthly RSV shots, well visit and sick visits, Austin has grown to
> abhor any doctor's office. His original appt. was 3/1, but he had a
> shot the day before and when I took him in to see Dr. Rosen, he
> flipped. So bad that we had to reschedule. I am nervous that this
will
> happen again and want to prepare him, but he is only 2.  Any
> suggestions? I told him yesterday about going and a little about the
> echo (he hasn't had one in over a year.) I am just so nervous he is
> going to freak again.
> Thanks,
> Andee
> Mom to Tyler and Austin (DORV w/VSD and PA)
>

--- In mlhsepa@yahoogroups.com, brspri@... wrote:
>Hi Carol,
Thanks for your input. We went today and Austin did really well. I
did have to lay on the table with him for the echo, but other than
that, he did great.  We did find out he does have to have a lung
scan, are you or anyone else familiar with it?

Also, did you know Dr. Rosen is leaving? He is headed to Ohio some
time in the summer...
Andee

>
> In a message dated 5/4/2007 8:18:24 AM Eastern Daylight Time,
> andeelee@... writes:
>
> Hello,
> I was hoping you gals might be able to help me.  Austin  has his
visit
> with the cardiologist next Tuesday.  These past few  months with
> monthly RSV shots, well visit and sick visits, Austin has  grown
to
> abhor any doctor's office. His original appt. was 3/1, but he had
a
> shot the day before and when I took him in to see Dr. Rosen, he
> flipped. So bad that we had to reschedule. I am nervous that this
will
> happen again and want to prepare him, but he is only 2.  Any
> suggestions? I told him yesterday about going and a little about
the
> echo (he hasn't had one in over a year.) I am just so nervous he
is
> going to freak again.
> Thanks,
> Andee
> Mom to Tyler and Austin (DORV  w/VSD and PA)
>
>
> Andee, Adam has been through the ringer with doctors too and for a
long  time
> was very afraid when I would tell him we were going to the DR. He
is much
> better when I assure him that there will be no shots and that Dr
Rosen  is  not
> allowed to give shots. It really helps at the echo that they have
kids  movies
> playing. You could even take his favorite dvd and they would let
him  watch
> it. The echo tech at the Lancaster office has been so wonderful
with Adam  too.
> She  used to pretend to be to be super grover for Adam!
>     For some reason Adam hates the EKG stickers and is  always
very nervous
> about that part. As soon as we get in the door, he is asking  if
he is getting
> stickers. They always think he means the fun stickers they give
as prizes and
> tell him yes so he flips out. I have to quickly jump in and
explain he wants
> to know if he is getting an EKG. As he gets older, he asks that
by himself
> now. Those stickers remind him of the hospital monitor stickers
and  he knows
> how much they hurt being pulled off.
>      Adam has also gotten Botox injections and that is  painfull.
when we are
> going to something like that, I have learned to just lie  about
what is going
> to happen or avoid the questions. If I do not do this, I  would
never get him
> in the building.
>     For echo's I have always told Adam that they are just  taking
pictures
> and I promise it will not hurt. I think 2 and 3 are the hardest
years for an
> echo. They are so afraid. They usually calm down once they
realize  it is not
> hurting them and they have the tv to watch.
>    Have you considered not telling him about the appointment
until you get
> there? I also like to talk about something fun we will do when we
leave there.
>    Good luck and let us know how you make out!!
>    Carol
>
>
>
> ************************************** See what's free at
http://www.aol.com.
>

Aiden has a non-profit fund established in his name to help cover
medical costs (its been a ride...!).  Anyhow, I wanted to do a
fundraiser for his fund, but I need an organization to back it.  Does
anyone know how I could do this?



--- In mlhsepa@yahoogroups.com, Ann-Jeanette and Rudy Vasko
<ajrvasko@...> wrote:
>
> Stacy,
>
>   In the past we have walked as a family.  We have a lot of adult
heart disease in our family.  My dad was the Eastern PA president of
AHA about 10 years ago so it's one of our family's favorite walks.
>
>   I'm also the organizer for my company for the American Cancer
Society fundraisers.  We're a small biotech that works on lung
cancer.  I guess this has become my hobby.
>
>   For this year's walk we will be adding friends to our family (and
some co-workers), but we're not a part of a company or organization
yet.  Maybe in the future.
>
>   Has anyone attempted to start a non-profit trust so that when you
have a fundraiser you can divide the money between several
organizations?  I had a friend that made her dance group non-profit.
I figured then I wouldn't need to worry about getting the donation
contracts from AHA, CHOP etc.  I could just write them myself.
>
>   Ann-Jeanette
>   Mom to Christian, Jenna and Ella (HLHS)
>
> Stacy <mom2myhlhsboy@...> wrote:
>                     Thanks for that info A-J!  I have never seen
a "tree" before.  Do you walk
>    As part of a group or by yourselves?
>
>
>     Stacy
>   Mom to Raychel, Zakk, Nathan
>   Madisyn and Noah ~HLHS/DORV
>
>   -------Original Message-------
>
>     From: Ann-Jeanette and Rudy Vasko
>   Date: 5/3/2007 4:30:13 PM
>   To: mlhsepa@yahoogroups.com
>   Subject: Re: [mlhsepa] Heart Walk 2007
>
>
>       First things first.  If any of you are going to do a
fundraiser and want to have items donated, you can ask the
organization like AHA for a donation request form.  All the big
charity organizations have them.  You can then take the form (in this
instance) for the purpose of restaurant tree to business that you
would like to donate items or services.  The restaurant is making a
contract with the charity for whatever amount they are willing to
donate.  For example the restaurant may donate $50 to $100 gift cards
for a meal for two specifically for your event.
>
>   You then place all of the gift cards for each restaurant into
separate envelopes.  My mother has done this at Paoli Hospital they
hang the envelopes on a Christmas tree.  Thus the name "restaurant
tree".
>
>   Your event guests/friends/suckers with money then pay $25 per
envelope and get to pick an envelope off the tree to a surprise
restaurant (for a higher value than paid).
>
>   The guest can also receive a donation receipt if you arrange for
it in advance with your charity.
>
>   Any other questions?
>
>   And does anyone have any other ideas?
>
>   Ann-Jeanette
>   Mom to Christian, Jenna and Ella (HLHS) and 1 YEARS OLD TODAY :o)
>
>
> brspri@... wrote:
>           In a message dated 5/3/2007 9:10:17 AM Eastern Daylight
Time, ajrvasko@... writes:
>     At this point we're planning on a silent auction for the walk
and we're also going to do a restaurant tree for CHOP.
>
>
>
>
>   what is a restaurant tree??
>   carol
>
>
>
>
> ---------------------------------
>   See what's free at AOL.com.
>
>
>
>
>
>
> ---------------------------------
>   Ahhh...imagining that irresistible "new car" smell?
> Check out new cars at Yahoo! Autos.
>
>
>
>
>
>
>
> ---------------------------------
> Don't be flakey. Get Yahoo! Mail for Mobile and
> always stay connected to friends.
>

Thanks for that info A-J!  I have never seen a "tree" before.  Do you walk  As part of a group or by yourselves?      Stacy Mom to Raychel, Zakk, Nathan Madisyn and Noah ~HLHS/DORV -------Original Message-------   From: Ann-Jeanette and Rudy Vasko Date: 5/3/2007 4:30:13 PM To: mlhsepa@yahoogroups.com Subject: Re: [mlhsepa] Heart Walk 2007   First things first.  If any of you are going to do a fundraiser and want to have items donated, you can ask the organization like AHA for a donation request form.  All the big charity organizations have them.  You can then take the form (in this instance) for the purpose of restaurant tree to business that you would like to donate items or services.  The restaurant is making a contract with the charity for whatever amount they are willing to donate.  For example the restaurant may donate $50 to $100 gift cards for a meal for two specifically for your event.   You then place all of the gift cards for each restaurant into separate envelopes.  My mother has done this at Paoli Hospital they hang the envelopes on a Christmas tree.  Thus the name "restaurant tree".   Your event guests/friends/suckers with money then pay $25 per envelope and get to pick an envelope off the tree to a surprise restaurant (for a higher value than paid).    The guest can also receive a donation receipt if you arrange for it in advance with your charity.   Any other questions?   And does anyone have any other ideas?   Ann-Jeanette Mom to Christian, Jenna and Ella (HLHS) and 1 YEARS OLD TODAY :o) brspri@... wrote: In a message dated 5/3/2007 9:10:17 AM Eastern Daylight Time, ajrvasko@yahoo.com writes: At this point we're planning on a silent auction for the walk and we're also going to do a restaurant tree for CHOP.   what is a restaurant tree?? carol See what's free at AOL.com. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos.