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.
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
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.
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)
We walk too - October 13 in Lancaster. Last year was our first year
and we didn't do anything elaborate raising money so thank you for
all of the info! I will be trying to do more this year.
And happy belated to Ella!
Andee
Mom to Tyler and Austin (DORV w/VSD and PA)
--- In mlhsepa@yahoogroups.com, "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@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.
>
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.
Awww Happy 1st Birthday!!! Hope you have a fun day!!!
--- In mlhsepa@yahoogroups.com, Ann-Jeanette and Rudy Vasko
<ajrvasko@...> wrote:
>
> Happy Birthday to my Little Ella!!!
>
> I can't believe she is already one year old. I don't think I
appreciated what a milestone 1 yr old really was until this year.
>
> Love to all y'all,
>
> Ann-Jeanette
> Mom to Christian, Jenna and Ella (HLHS)
>
>
> ---------------------------------
> Ahhh...imagining that irresistible "new car" smell?
> Check outnew cars at Yahoo! Autos.
>
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.
We're in the process of moving our fundraiser date. AHA orginally said they were going to have the walk on the 23rd so we booked Waynesboro CC for the 21st. I hope that we are able to move it a week up.
I would love to see our heart family out at the park together.
Ann-Jeanette
Julia <juliarow@verizon.net> wrote:
Hi everyone, Just wanted to let you know that Lily has started a Heart Walk 2007 team. Her team is "Team Lily Jane." We will be walking Sunday September 16, 2007 at 8:00 AM at Citizens Bank Park in Philadelphia, PA to support the American Heart Association and find a cure for CHDs. Please join Lily's team or make a donation by clicking on the link below: http://heartwalk.kintera.org/faf/r.asp?t=12&i=211435&g=1956550
Thanks for your support, Julia Rowbotham, mom to Lily (HLHS) 2006 cp: LilyRowbotham
We're in the process of moving our fundraiser date. AHA orginally said they were going to have the walk on the 23rd so we booked Waynesboro CC for the 21st. I hope that we are able to move it a week up.
I would love to see our heart family out at the park together.
Ann-Jeanette
Julia <juliarow@verizon.net> wrote:
Hi everyone, Just wanted to let you know that Lily has started a Heart Walk 2007 team. Her team is "Team Lily Jane." We will be walking Sunday September 16, 2007 at 8:00 AM at Citizens Bank Park in Philadelphia, PA to support the American Heart Association and find a cure for CHDs. Please join Lily's team or make a donation by clicking on the link below: http://heartwalk.kintera.org/faf/r.asp?t=12&i=211435&g=1956550
Thanks for your support, Julia Rowbotham, mom to Lily (HLHS) 2006 cp: LilyRowbotham
We're in the process of moving our fundraiser date. AHA orginally said they were going to have the walk on the 23rd so we booked Waynesboro CC for the 21st. I hope that we are able to move it a week up.
I would love to see our heart family out at the park together.
Ann-Jeanette
Julia <juliarow@...> wrote:
Hi everyone, Just wanted to let you know that
Lily has started a Heart Walk 2007 team. Her team is "Team Lily Jane." We will be walking Sunday September 16, 2007 at 8:00 AM at Citizens Bank Park in Philadelphia, PA to support the American Heart Association and find a cure for CHDs. Please join Lily's team or make a donation by clicking on the link below: http://heartwalk.kintera.org/faf/r.asp?t=12&i=211435&g=1956550
Thanks for your support, Julia Rowbotham, mom to Lily (HLHS) 2006 cp: LilyRowbotham
Hi everyone,
Just wanted to let you know that Lily has started a Heart Walk 2007
team. Her team is "Team Lily Jane." We will be walking Sunday
September 16, 2007 at 8:00 AM at Citizens Bank Park in Philadelphia, PA
to support the American Heart Association and find a cure for CHDs.
Please join Lily's team or make a donation by clicking on the link
below:
http://heartwalk.kintera.org/faf/r.asp?t=12&i=211435&g=1956550
Thanks for your support,
Julia Rowbotham, mom to Lily (HLHS) 2006
cp: LilyRowbotham
Aiden must have been developing the pneumonia for quite awhile before crashing. They had been talking about whether or not he was wheezy or it was an air leak for about 2 weeks... so it is really a miracle he weaned as well as he did. Just shows how strong he really is.
He is doing much better this time, and they are moving at double the speed they did the last time. He needs to get to a rate of 6 and he is at a rate of 18 now, being reduced by 2 a day... so it shouldn't be long. He also needs to be reduced on his supported breaths from 12 to 8... not sure how much they will reduce per day on that one.
--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote: > > Yeah for Aiden going down on the vent settings!! Adam struggled at > times when being weened also. I think they get to a certain point and > need a rest. I know the set back are so hard but when the weening > starts again it seems to go better each time. Don't be suprised if he > has to go back on the vent even after they finally pull the tube. These > little guys try so hard to be without it be they get tired and > sometimes need a rest. He will get there!!! > Fuuny thing... you asked me recently if Adam hang lung issues from > being on the vent for such a long time and I said no. WEL.... he had a > rough winter since it was the first year he was in school (preschool) > and it is now thought that he has a mild asthma. We can live with that! > Keeping you in my thoughts and prayers!! > Carol >
Aiden must have been developing the pneumonia for quite awhile before
crashing. They had been talking about whether or not he was wheezy
or it was an air leak for about 2 weeks... so it is really a miracle
he weaned as well as he did. Just shows how strong he really is.
He is doing much better this time, and they are moving at double the
speed they did the last time. He needs to get to a rate of 6 and he
is at a rate of 18 now, being reduced by 2 a day... so it shouldn't
be long. He also needs to be reduced on his supported breaths from
12 to 8... not sure how much they will reduce per day on that one.
--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote:
>
> Yeah for Aiden going down on the vent settings!! Adam struggled at
> times when being weened also. I think they get to a certain point
and
> need a rest. I know the set back are so hard but when the weening
> starts again it seems to go better each time. Don't be suprised if
he
> has to go back on the vent even after they finally pull the tube.
These
> little guys try so hard to be without it be they get tired and
> sometimes need a rest. He will get there!!!
> Fuuny thing... you asked me recently if Adam hang lung issues
from
> being on the vent for such a long time and I said no. WEL.... he
had a
> rough winter since it was the first year he was in school
(preschool)
> and it is now thought that he has a mild asthma. We can live with
that!
> Keeping you in my thoughts and prayers!!
> Carol
>
In a message dated 4/23/2007 2:22:23 PM Eastern Daylight Time, andeelee@... writes:
I didn't realize you went there too. I really like Dr. Rosen, he is up front about everything. Sometimes more than I would like, but I would rather not be suprised by things down the road!
I used to see Dr Weis in Reading but I really disliked him. Right before Adam's last heart surgery, I got a satisfaction survery in the mail and I let them have it. I said that when Adam was finished with his surgeries, we would be leaving the group to go to a Dr in Harrisburg that left the group from Hershey. Well, after Adam's last heart surgery, Dr Rosen confronted me about the survey I filled out and asked if I would come to Lancaster to see him instead of leaving. I agreed to try it. I have always liked Dr Rosen. Recently, they found a collateral artery in Adam that will have to be clamped off eventually. We have reason to believe they suspected problems and did not tell us before his cath last year. I was very upset at the thought of him being less than 100% truthful. We confronted him but he denies it. We are staying with him for now but are a little less trusting.
I really like the staff at the Lancaster office. Julie is my favorite. I trust her more than anyone else besides Dr Myers.
I didn't realize you went there too. I really like Dr. Rosen, he is
up front about everything. Sometimes more than I would like, but I
would rather not be suprised by things down the road!
--- In mlhsepa@yahoogroups.com, brspri@... wrote:
>
>
> In a message dated 4/23/2007 7:26:14 AM Eastern Daylight Time,
> andeelee@... writes:
>
> Well Dr. Rosen of Penn State Children's
> Heart Group in Lancaster
>
>
> Andee, This is where we go for visits too.
> Carol
>
>
>
> ************************************** See what's free at
http://www.aol.com.
>
When his pulmonary artery was attached, they did not put in a
valve. Originally in the hospital, we we were told that he might
need a valve, he might not. Well Dr. Rosen of Penn State Children's
Heart Group in Lancaster says that Austin will need one, but he
didn't give a time frame, just it might be one year, might be 10.
One of his pulmonary arteries is also narrowed, so he might need
that fixed as well. We go to see Dr. Rosen in May. But he is doing
well. I think to look at him you would never know he has had any
problems. Dr. Rosen keeps telling us that he will see that Austin
needs surgery before we see any signs. I just hope he is right!
--- In mlhsepa@yahoogroups.com, "brspri" <brspri@...> wrote:
>
> I did not know that Austin would need another surgery. Do you know
> which surgery or a time frame for it? How is he doing?
> Carol
>
Yeah for Aiden going down on the vent settings!! Adam struggled at
times when being weened also. I think they get to a certain point and
need a rest. I know the set back are so hard but when the weening
starts again it seems to go better each time. Don't be suprised if he
has to go back on the vent even after they finally pull the tube. These
little guys try so hard to be without it be they get tired and
sometimes need a rest. He will get there!!!
Fuuny thing... you asked me recently if Adam hang lung issues from
being on the vent for such a long time and I said no. WEL.... he had a
rough winter since it was the first year he was in school (preschool)
and it is now thought that he has a mild asthma. We can live with that!
Keeping you in my thoughts and prayers!!
Carol
Subject: Re: Yahoo! Groups: Welcome to mlhsepa. Visit today!
Hi my name is Julia. I am the wife of Jeremy and mother to Lily(HLHS) born 2006. Lily was diagnosed at 24 weeks gestation with HLHS. She was born at Lankenau Hospital in Wynnewood, PA on February 25, 2006, and transfered to CHOP via emergency transport at 8 hours old.
On February 28, 2006 she had her Norwood procedure performed by Dr. Spray (BT shunt). During her third week of hospitalization she developed a kink in the shunt and a stent had to be placed by catheterization to open the narrowed area. While the catheters were being removed, her right external iliac artery was ruptured requiring emergency abdominal surgery to clamp the artery and save her life.
On August 7, 2006 Lily had her Glenn procedure also performed by Dr. Spray. After this surgery she developed a cardiac arrhythmia requiring numerous hospitalizations and a variety of medications. On December 8, 2006 she had a pacemaker implanted. Her arrhythmia is being controlled with amiodarone, and we followup regularly with electrophysiology at CHOP.
Lily is an extremely feisty little girl who doesn't like being told "no." We are working on getting her walking and she currently receives PT services through Early Intervention.
It is so wonderful to be a part of this group. Thanks Ann-Jeannete for letting me know about it!!
Subject: Yahoo! Groups: Welcome to mlhsepa. Visit today!
Hello,
Please reply to this email sharing with us your child's condition and reason for joining. All memberships must be approved my the moderator and you will hear from us soon. If you do not respond within 3 days your membership will not be accepted. Thank you.
Subject: Re: Yahoo! Groups: Welcome to mlhsepa. Visit today!
Hello,
My name is Andee and my son's name is Austin. He was born on March of 05 with DORV w/VSD and Pulmonary Atresia. He had surgery at Hershey at 4 days old and may need one to two more surgeries. I am looking for other Moms to connect with regarding children with Heart Defects. Carol recommended I join this group.
>Subject: Yahoo! Groups: Welcome to mlhsepa. Visit today!
>
>
>Hello,
>Please reply to this email sharing with us your child's condition and reason for joining. All memberships must be approved my the moderator and you will hear from us soon. If you do not respond within 3 days your membership will not be accepted. Thank you.
Subject: Re: Yahoo! Groups: Welcome to mlhsepa. Visit today!
Hi,
My name is Ann-Jeanette. I am a Mom to 3 kids. Christian (10), Jenna (5) and Ella (will be 1 in a few days). HAPPY BIRTHDAY ELLA!
Ella was diagnosed with a Hypoplastic Left Heart January 3rd 2006 in utero by a routine ultrasound and was born exactly 4 months later at PennsylvaniaHospital in Philadelphia. She was quickly shipped off to CHOP where she had her 1st surgery at 36 hrs old. Her first surgery was a Norwood operation with a modified Sano (RV to PA) shunt. Although her surgeon Dr. Spray prefers BT shunts, Ella was not a good candidate due to her physiology. Exactly one week after her first surgery I got a knock on the door of the parent sleeping rooms. Ella had become critically unstable overnight due to massive fluid build up around her heart (a pericardial effusion). The doctors were not comfortable moving her to the OR so they were planning on tapping the effusion in the CICU. Dr. Gaynor tapped over 150cc of fluid from around her heart, 100cc of which came gushing out immediately. But after that mini nightmare Ella improved quickly. We were out just 5 days later.
Our first summer was a little trying. We were literally in CHOP every 3 to 4 weeks. All the nurses knew us in the CCU by the end of summer and of course we love them all, especially Erica and Donna.
Ella had her second operation, a hemi-Fontan, September 26, 2006. Fortunately we had no major issues and were out of the hospital in 5 days. Yippee.
We’ve only had one CHOP visit since then for a stomach bug that made her dehydrated.
Today Ella is thriving, wonderful and in to everything.She is 75% for height and weight and seems to be “on time” developmentally which pleases her parents and docs to pieces.
Thanks for forming a local group.I look forward to meeting new heart friends.
Ann-Jeanette
Mom to Christian, Jenna and Ella (HLHS)
mlhsepa Moderator <mlhsepa-owner@yahoogroups.com> wrote:
Hello, Please reply to this email sharing with us your child's condition and reason for joining. All memberships must be approved my the moderator and you will hear from us soon. If you do not respond within 3 days your membership will not be accepted. Thank you.
Regards, Moderator mlhsepa
Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
I wanted to share that there is a CHD Awareness Longaberger TV Time
Basket.
Please visit the following site for more info on how to purchase yours:
http://www.chdfundraiser.bravehost.com/fundraiser.html
I also put the link in the link section as well :)
That's my girl, lol :)
--- In mlhsepa@yahoogroups.com, "noahshlhsheart" <mom2myhlhsboy@...>
wrote:
>
> I see Kylie's story is on the main page of Saving Little Hearts!
>
> Stacy
>