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.

Saturday, July 28, 2012

My Diva:)

Little Diva! Love her to pieces. Finally was able to get Callie an appointment with a pulmonologist for this coming Tuesday! We shall see what they say, of course I'm not expecting much since I have feeling thats what were going to get. This all could be nothing, but her going on antibiotic every other month isn't exactly the best thing for her!!! Hope everyone is enjoying there weekend. Callie and I did errands, now resting indoors in the nice, cold air conditioning:) Callie hates the heat and doesn't tolerate it well, so if were not in a pool were not outside;)

Wednesday, July 25, 2012

Here we go..........

I feel like I keep living the same dream over and over:/ Callie just got off antibiotics a week ago this past Sunday and Sunday she started with her dry, annoying cough and as of today, it is once again her horrible, mysterious cough. She doesn't have any other symptoms than being sick just this cough. This cough has been coming and going for a year now and everytime they just stick her on antibiotics to get rid off. So, about a month ago I sat down and charted every single time that I had documented about this cough and that's when I really realized how long this has been coming and going. Long story short, talked with her cardiologist and we both agreed that we think Callie should see a pulmonologist. Been calling since yesterday at 130pm to get her in to be seen while she has her symptoms and before she has to be put on antibiotic again. So the pulmonologist can see this cough in action! But IT IS MISSION IMPOSSIBLE!!! :/ Will be harassing them tomorrow, bright and early at 8am:) So, that is what has been going on this week so far! Beyond frustrated, just wanna cry! Please be in prayer that this is nothing serious. If anyone has any suggestions or their child has experienced anything like this, I would love to hear from you. I will update as soon as I hear anything from docs.

Friday, July 20, 2012

Summer 2012

We have been very thankful for enjoying this summer at home, just hanging out and relaxing as a family. Callie has been enjoying school and feel blessed she has such loving teachers that we can trust our little girl with.
Playing w/friends at school!
Callie on the 4th of July Here lately we have been working real hard on Callie eating and trying to backoff on the feeding pump, so that she feels like eating more during the day. So far, she has been doing very well. Here is Callie showing off her plate.....we tell her an empty plate is a "happy plate":)
This month marks 6mths. since Callie's last trip to California. Which means we only have 6mths till we haveto return, that is if Callie remains stable. We are hopeful that she will make it to January but at the sametime we know it is a possibilty that we will return sooner. One of those harsh realities of our lives that we have just learn to accept. Callie is becoming rather good at writing her name and her speech continues to improve. Getting so big;)Her new thing lately is chewing gum, not something I am thrilled about....but she definitely loves, she thinks it makes her a "BIG GIRL";)
At the beginning of July she had another mysterious cough appeared. That once again, she went on a 2 week course of antibiotic for and by the end of the 2nd week it finally disappeared. She had no other symptoms of being sick, just a nasty cough. So, we aren't sure why she keeps getting this cough. But, we are looking into consulting a pulmonologist. Callie's lungs have been through a descent about of stress over the past 4yrs. with surgery after surgery, so we know her lungs are not 100%....so a pulmonologist might shed some light on this crazy, recurring cough.
Daddy & Callie cutting up, like always!
ZOO FUN!