Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Friday, July 29, 2011

Go Home?!

We arrived in California yesterday afternoon, Callie was a superstar on all the flights. Couldn't have asked for anything better!

Currently we are staying in a hotel waiting for a room at RMH to open open:/

Early this morning we had our meeting with Dr. Hanley to discuss the plan for Callie's surgery on Wednesday. The plan is to remove both of Callie's central shunts she have a replace with 1 shunt. And then remove the aorta of her lower left pulmonary vein. Doing this will hopefully prepare Callie for her Glenn in 6mths. The BIG thing with this surgery is she HAS TO be on bypass!! As most of you know, Callie has never been on the heart-lung machine with any of her surgeries. Dr. Hanley has always tried to avoid the machine due to Callie's complex anatomy and the risk it holds for her. But, this surgery has to be done on bypass there is no way around it. I am scared about this but know he would never do anything that he didn't think her body could handle. Please pray for her and that her body tolerates this well and she comes off of it just fine and there are no complications. All in all, it was a good meeting. Callie continues to head down the right track and this is one more step to her much needed Glenn.

After our meeting, we decided to take Callie to the Monterey Bay Aquarium.
Will and I have been before but Callie has not and we knew she would love it:) Her favorite were the penguins! We had a nice time just taking our time and enjoying the day with Miss Callie. The weather was much cooler there than in Palo Alto which was nice!
Callie and Daddy at Lunch
Mommy and Callie at the Aquarium
We are enjoying the next few days with Callie before she goes into surgery. So, yes she continues to be spolied rotten;) Callie has been asking since when arrived, "home, me go home" She misses home already and we've only been here a day:( Poor baby, she doesn't understand. It's so hard, but we are doing are best to keep her occupied:)

So, pre-op on Tuesday at 730am and surgery Wednesday.

I will continue to update on our happenings!

Thursday, July 28, 2011

Heading out....

We head out in the morning for California! I've been busy packing, cleaning and all that kind of fun stuff;) Callie seems exicited about her plane ride but she did tell me tonight, Mama no doctor! Breaks my heart to hear her say that, but we will try and make it as fun as possible before she goes into the hospital.

We have a meeting Friday morning with Callie's surgeon, Dr. Hanley to discuss the details of her surgery.

Please pray for a smooth and safe trip.

I will update when we get settled!

Friday, July 8, 2011

These days..........

Callie been enjoying lots of trips to the beach, pool and movies this summer. She loves the beach but not the pool so much. She just isn't comfortable in the water yet! I think by next summer she will be ready to teach how to swim a little bit....at least I hope!
We took Callie to the Georgia Aquarium a few weeks ago and she loved it.
When Callie recieved her dream last September she recived something they call a "passport" and its good for so many different places where the family gets into for free! So, we figured we better take advantage of it since it will expire very soon.

Callie fell in love with dolphins! We are hoping in the next year or so to take her to Discovery Cove in Orlando so she can swim with the dolphins.

Callie's speech has exploded over the last month or so. I never thought I would hear here tallk so well! It is unbelievable...I love it but at times I wish I had ear plugs too! haha
We are busy getting ready for Callie's next trip to California for her 6th heart surgery. We leave on July 28th and her surgery will be August 3rd. Will and I are stressed more so this time I believe than ever before, at least I am. Callie has had so many surgeries and there are no words to describe my fear. But, I try my best to lay it all at the Lord's feet but sometimes its not the easiest thing to do. But, I have great faith she will do awesome:) She will show you her scar now and say this my heart. She is very proud of it and so she should be:)

We are doing a fundraiser in a week (Sat. July 16th) to try and offset some of the expenses of this upcoming surgery. It will be a Blood Drive & Cookout w/Jewelry and a painting being auctioned off. The location is Victory Chapel Parking Lot: 7830 Normandy Blvd 10am-4pm. Sairah Grace will be providing entertainment through out the day. Callie also has another Vystar donations account that has been opened in her name. The information is under the paypal account info on the side of the page.
Callie enjoying the fireworks!

Please keep Callie in your prayers as her surgery approaches. Also, prayers for our family as a whole during this time. I currently barely have a voice and fighting whatever this crap is I have, I guess stress really does breakdown your immune system! Hope everyone is having a nice summer:) I will update before we leave for California! Thank you to everyone for all support, we are very blessed to have all of you.