Finally...RSV shots on the way!

After days of screaming at my insurance/script coverage, they are finally mailing out the RSV shot. Jean from Dr. Wapshares office (who has be wonderful and calling the insurance company just as much as me) is coming in on Saturday(her day off) just to give Viola the shot! Since OF COURSE they cant get it here before late Friday! She has been so helpful. So Saturday she should have her shot!

Dont forget....you need your flu shot!

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!

9/25/09 Appointment

Ok so I must be writing these appointments down wrong. We did meet with her surgeon today and discussed the surgery, but no pre-op today. We have to go to the hospital for that and they will call me on Monday to set that up. Kinda stinks cause me and Julio both took off work. I could have at least got a 1/2 day in and Julio could have just went to work. Hopefully I can get an on call or two when I come back from FMLA to help me make up for it (I HATE being on call in the winter!!) At first I was upset, but the doctors and the rest of the staff have been wonderful! We want our daughter to have the best care, so to me this is nothing to get upset about. I also think I could have marked it wrong on my calender. Julio also pointed out this is good b/c now we can go to the hospital and "check it out" before her surgery. So in the end it worked out for the best! Just cross your fingers and hope they do pre-op Saturday!

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!)

Viola getting her BP!

Sent from my Verizon Wireless BlackBerry

NON important update....

Just testing..this should also now be updating my facebook feed as well.....
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!

Great Story

Isnt the Internet great? I just found this great story about Viola's surgeon.

http://www.montefiore.org/whoweare/stories/Weinstein/

RSV & Flu Shots...

I called Dr. Wapshares office this morning about her RSV (Synagis) and flu shot so dont worry I didnt forget! The nurse is currently filling out the paperwork to send to the company that makes the shot and the insurance company. She said there is a lot of paperwork, but I should hear if Im approved by the end of the week. We are aiming to get her first RSV shot 2 weeks before her surgery so her immune system can do one thing at a time. I will let everyone know when I hear something...

Todays Doctor's Appointment...

Today we had another appointment with Dr. Fethke. First ,Viola got her EKG and this time she only ripped off one of the test leads! After that Dr. Fethke came in and performed a routine exam. She has gain almost 2 pounds since her last visit and he said that is an excellent sign and she is thriving. Its good to go into the surgery as healthy as possible. We then discussed some concerns I had including her being a little behind other kids her age. She gets tired easy because her heart is working twice as hard and he has seen this before. In fact he has seen that after the surgery that they will be FULL of engery. I also asked about her care before she goes in for surgery. She will need her FLU shot and a series of RSV shots. I will be scheduling these appointments with Dr. Wapshare. I didnt notice how many questions I was asking because when we finally left I walked into the waiting room and it was full! I feel so comfortable with Dr. Fethke and also Dr. Weinstein. For them to sit with me each time for a LONG time a discuss every detail about her surgery really does help. Our next appointment is with Dr. Weinstein on Sept 25. At this appointment we will review every detail of her surgery. This is gonna be a tough one, but it does help that Julio & I trust these doctors and they really seem to care about Viola. Anyways, again thank you for your emails and prayers! Next time I will try to get a pic while they are doing her EKG, that should be fun!

Pic after EKG

Viola after her EKG. Waiting for the doctor!
Sent from my Verizon Wireless BlackBerry

My Teddy Bear.

This is Viola with her bear she received today at her echo appointment! The card on it read...
"Honoring the Heart of an Angel, The Kristen Elise Tramm Memorial Fund"

I will see if they have a website and post it.
Sent from my Verizon Wireless BlackBerry

Echo Appointment

Today Viola had another ECHO. I was at the doctors for about 2 hours! They just wanted to make sure they got every picture they needed. We are meeting with her doctor this Saturday to discuss these pics. They also gave Viola a teddy bear for being such a good patient. It helps they play Elmo in the office while they do test.

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!