Wednesday, October 10, 2018
2018 WOW
Sunday, November 16, 2014
Viola 2015 Tri-County Junior Honoree!
We have created a website. www.walk4viola.com Viola has been selected as this year's Junior Honoree! We are hoping to have an even bigger turn out then last year and we have raised our fundraising goal to over $3000! So lets hope we reach it! Please Join us for the 2015 Tri County Heart Walk.
Thursday, August 1, 2013
PULSE OX NY IS A LAW!!!!
Saturday, March 3, 2012
Heart Healthy....
On a side note (which I sure you all hear me talk about), there is a bill in NY (A7941-2011) to require facilities to perform pulse oximetry screening on newborns. The Bill is currently being reviewed by the NYS Dept of Health. I would ask if you can write a letter to your local assembly person and state senator and also a letter to the Dept of Health.
Thank You all!
Friday, February 24, 2012
Update 2012
I want to thank everyone who has sent letter to New York State Department of health & their local NYS assembly & senators. New York State has a bill A.7941-2011 that will support pulse ox testing for newborns. For more info on this check out http://pulseoxadvocacy.com/
Friday, December 3, 2010
Violas next heart appointment...
Sent via DROID X on Verizon Wireless
Sunday, October 10, 2010
Almost One Year Later!
I will also be a pain in the ass again about the flu shot. If you dont have it, dont expect to hold her!! Its that simple. I will update again once we get some (GOOD) news from the doctor!!! Again, thanks to everyone for their support!!! HAPPY HEART DAY VIOLA!!
Friday, March 12, 2010
WOW GREAT VISIT!
Wednesday, March 3, 2010
One more shot to go!
Wednesday, February 3, 2010
Heart Month!
Wednesday, January 27, 2010
Cant wait for the End of RSV season!!!
So I am home today because she has a fever and I am spoiling her b/c she has been thru way to much!
Good news is her iron levels are normal once again. (They were low after her surgery due to so much blood loss) and her doctor said she looks GREAT! Cant wait til April when these Synagis shots are over!
Sunday, January 10, 2010
1/9/09 Doctors appointment!
Viola seems to HATE anyone in scrubs now (every time she see scrubs she thinks SHOTS!) The nurse came in to do the EKG and she was NOT having it! But dad grabbed some toys for her to play with while they did the EKG and she calmed down!
Good news on my Insurance issue! I SHOULD be getting a reimbursement from WellPoint in the next 2 weeks! They agree they screwed up (FINALLY!) and Empire BCBS was so wonderful this whole time! Every time I call WellPoint, they say call Empire BCBS and every time Empire and I have a 3 way call with WellPoint! The guy at Empire I spoke to this week was great he was YELLING at them and said he is also filing a formal complaint! WOOHOO! I will be happy to have all my $$ back! It’s been going on for months and I’m happy it is over. I was not going to let Viola NOT get the RSV shot…but those shots are EXPENSIVE and I can’t wait for that check! ;)
One last thing...
J.E.T.S JETS JETS JETS!!!
Saturday, January 9, 2010
Wednesday, December 30, 2009
Almost 2010...WHAT!
Blog4CHD.com is hosting a week long blogging event for Congenital Heart Defect Awareness January 25th thru January 31st 2010. So please visit there site and tell your CHD story!
Viola got her RSV shot yesterday. No problems this month with insurance (well none know yet), but Im still waiting for my refund for the last month they screwed up on! She has her next card appointment on Jan 9. Cross you fingers this is a BIGGIE!
Happy New Year!
Friday, December 18, 2009
Happy Holidays
I am excited to see of the new CHD action for 2010. We have CHD awareness weeks, and there is even a bill in congress (The Congenital Heart Futures Act) to support funding for research. I am still a little confused about all the smaller CHD groups. I know this was a discussion on facebook, but there are some great groups our there, but we need to all be one! For example for Cancer support there is the American Cancer Society. Its hard to explain and ask for support for CHD when if you google it 15 different sites are return…and they all have the SAME goal. To be honest I am following the lead of some of the other CHD parents on this (Thanks for doing all the work Levi)., but once this is all resolved I expected this to bring awareness to this birth defect.
Merry Christmas and Happy New Year to everyone.
Sunday, November 29, 2009
Birthdays, Thanks & Insurance Issues AGAIN!
Now on to my latest insurance company vent. Today as I was reviewing my bank records and notice some of my co-pays are thru the roof!!! I order our scripts thru the mail so they send them every month. Empire told me last month that they would “fix” my coverage to reflect Viola RSV shots to be a major medical expense (not under RX). Well they fixed it all right…..This month’s scripts have cost about $700!! The good news is that their hours are M-F 8-5 (you know the hours I WORK!) And last month when they “fixed” this I was on the phone for about 4 hours!!! Here we go again! I know they are charging me the wrong amounts for my co-pays, but I’m wondering since I didn’t see it till now (after I received them in the mail) if they will reimburse me. Well I sure the hell am going to try! Its total BS! I keep everyone posted!
Wednesday, November 18, 2009
Going back to work.... just in time for the cold...AND IM SO HAPPY!
So I officially called my FMLA and said I’m returning to work! But my FMLA case is still open (this is why I wanted to save a vacation day or two…but the rules don’t allow for it(silly rule, but I just have to cross my fingers for a month!) It’s gonna be hard to try and get her back into a routine, she was sleeping thru the night again for a week, but she is back to waking up at 2am again! UGH! And yes….she is SPOILED now! She is sleeping in the bed once she wakes up from the crib, but I cant stand to see her cry after all she has been thru….That is the next BAD HABIT to break! I gonna be tired these next few weeks but its all worth it!
Friday, November 6, 2009
Todays Doctor's Appointment...Nov 6
Thursday, October 29, 2009
Shots Today!
Can you believe it! Viola will be ONE this Sunday!!! Wow, time flies. I remember the day so well. My dad spent the whole day with me saying "Lisa, DONT go into labor while I'm here" over and over again, and that night I went into labor. He missed it by a few hours! It would have been so funny if I went into labor while he was here..He would have called 911 and left me--HAHAHA! Anyways...
Happy First Birthday Viola!
Monday, October 26, 2009
More "Insurance" Issues....
On another note, sad news for another heart family. Baby Aiden lost his amazing fight after 15 hard days of life. His story can be read here: http://www.babyaidensjourney.com/. RIP Aiden, you have no idea how many lives you have touched!
Thursday, October 22, 2009
Todays Doctor's Appointment...
Tuesday, October 20, 2009
Day 2 at Home
Q's for the other heart parents...How long til your child got his/her appetite back after surgery??? Also, any tips on getting her to take her meds....I end up with more of it on me then in her mouth! Also any after surgery tips that I need...anything, PLEASE HELP!
Monday, October 19, 2009
Home Sweet Home
Sunday, October 18, 2009
In the car
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Homeward bound
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Someone is hungry
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Saturday, October 17, 2009
Still in the ICU
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Daddys turn....nap time
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Nap time.
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Sitting up!
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Friday, October 16, 2009
Playing
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Chest Tube is out!
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Update...
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good morning
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Thursday, October 15, 2009
Who lives in a pineapple under the sea...
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Bump in the road.
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Sitting up!
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My bobo!
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Wednesday, October 14, 2009
Good night!
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Vent is out!
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330 update
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Updates.....
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Latest update
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10oclock update
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First update
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She just went in!
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Tuesday, October 13, 2009
It's Time....
Saturday, October 10, 2009
Packing for the Big Day! Need Ideas...
Friday, October 9, 2009
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Thursday, October 8, 2009
Pre-Op Tomorrow
Friday, October 2, 2009
RSV Yesterday
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Wednesday, September 30, 2009
Finally...RSV shots on the way!
Dont forget....you need your flu shot!
Monday, September 28, 2009
Help Save Lives!
Thank You Levi (http://www.babyaidensjourney.com/) for sharing this .....
The Congenital Heart Futures Act was introduced in the Senate and House of Representatives on Tuesday, March 17, 2009! This bill calls for increased funding for research, a national registry, and funding for a national awareness and public education campaign.
So what's next?
Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to support this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. Please visit congress.org to contact your respresentatives. Then, follow the links to email them. It only takes 5 mins to email them. Viola will thank you!
Friday, September 25, 2009
9/25/09 Appointment
Anyways, enough venting, here are the updates.... Good news is she 17lbs 14oz (thats a weight gain of 2oz in 2 weeks!!) Thats my girl showing her DeStefano side!!! She can EAT! I officially signed the paperwork consenting to the surgery and review my list of questions with the doctor. We once again went over the risks (This is not easy stuff to talk about), but if we dont do this now she will need more surgeries when she is older. I am most concerned about her pain after the surgery. The Nurse Practitioner (Suzanne) is wonderful. She reassured me that Viola is in the best hands with the best care. She told me to expect Viola to be in no major pain by the time we are ready to take her home. Julio & I could not be happier talking to them once again. Bad news is I'm STILL waiting to hear about her RSV shots. Now the lab is telling me they are waiting for my insurance. My insurance says they have nothing, so Im making phone calls....they dont want to mess with me!!
Side note: Julio & I have already gotten our flu shots (thanks Mom!) But if you are thinking of stopping by, you need to have yours. I will NOT let you in the house if you dont...trust me I can be VERY nasty (as you know!)
Friday, September 18, 2009
NON important update....
Excited to spend the weekend at home with Viola! Still getting ready for her big day. The most important thing is she goes into the surgery healthy. Good news is she IS gaining weight! We are planning a late 1 birthday party/recovery party for Viola. It wont be as big as last summers party b/c Jay & I will be out of work taking care of Viola, so we are trying to keep it small. Thinking of renting a firehouse or hall (with a bar of course!!) But just cause she is having surgery, she still deserves a first birthday party! Im also still trying to find website about The Kristen Elise Tramm Memorial Fund that gave Viola the bear. The doctor could not say enough nice things about the Mother. In fact he told me when they move to the new location they will be honoring her daughter by naming the parents resource room after her. I am looking to see if they have a link for donations. I will post if I can find it. Thanks again everyone for your emails!
Wednesday, September 16, 2009
Great Story
http://www.montefiore.org/whoweare/stories/Weinstein/
Monday, September 14, 2009
RSV & Flu Shots...
Saturday, September 12, 2009
Todays Doctor's Appointment...
Tuesday, September 8, 2009
My Teddy Bear.
"Honoring the Heart of an Angel, The Kristen Elise Tramm Memorial Fund"
I will see if they have a website and post it.
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Echo Appointment
Also want to say, if your sick, DONT come over!!!! I think I have stressed to everyone already, but if you are sick, I will ask you to leave! If your kids are sick...DONT come over. If anyone in your house is sick...DONT come over! Im not trying to be rude, but I cant say this enough. She can not get sick before this surgery so PLEASE dont make me be nasty (Or nastier...LOL).
On a side note...I HATE SEARS. I took the whole day off today b/c they were supposed to be here this afternoon to fix my stove. Instead they call me while I'm at the doctors saying the tech has to come now or I will need to reschedule. I could have took a 1/2 day and saved myself the pay for when Im on FMLA! So FYI....Im still without an OVEN! Sorry just needed to vent!
Thank all for now...more on Saturday!
Monday, August 24, 2009
Friday, August 14, 2009
VSD Pic
Thursday, August 13, 2009
We went to visit her pediatrician (Dr. Wapshare, Chester Pediatrics)for a sick visit (it was just a first time Mom scare), but while at this visit, Dr. Wapshare heard a murmur and sent us to go see a pediatric cardiologist right away (we left his office and went right to the cardiologist). We went to The Pediatric Cardiology Associates in Middletown and meet Dr. Vepa. After an EKG & a ECHO (and a really LONG time), they let us know she has a hole in her heart. They said this is common, but the size of her hole was cause for a little concern. At this point we were at the wait and see stage, to see if it would close up on its own as they normally do. Over the course of the next few months we would get tests done, but during yesterday's tests they noticed more blood was leaking out compared to the tests over the passed few months. This is where the decision for surgery was made. After consulting with Dr. Fethke also from The Pediatric Cardiologoy Associates and then the surgeon Dr. Weinstein, we decide to schedule this. If we do not do this now later in life she will need many more risky surgeries.
So here we are now....I will be home with Viola during her recovery. I just filed for FMLA today (BTW....our new FMLA filing system is MUCH easier at work now then it was when I was prego!) Julio and I will be staying at the hospital with her and spoiling her a$$ rotten. I sense a spending spree on Elmo DVDs! I have spoke to some great people who have been thru this before and I even had one mother who sent me pics so I know what to expect when she gets out of surgery. I also spoke to Suzanne Courtwright, nurse practitioner today and thanked her for spending about an hour with me. Her Dr. Fethke & Dr. Weinstein really took the time out to explain everything going on and I can thank them enough for that. She gave me her direct cell number (she will regret it! LOL).
Viola is having a great time at Grandmas today. I'm very lucky she is with family so she can be spoiled ROTTEN!
Well thats it, thanks for the good feedback. Overall Im happy with this site, not like I dont like talking to EVERYONE, but it makes it a little easier on me! (Im not a phone person, yet I work for a phone company...FUNNY!)
Wednesday, August 12, 2009
Update on Viola
As of right now, Viola is in NO pain. She needs this surgery to correct this issues before it becomes a MAJOR issue. Her surgery will be performed at the Childrens Hospital at Montefiore (Bronx, NY).
Thats all I have for now. I gonna try this website out, see how it is...Please let me know what you think!