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.

Thursday, July 2, 2015

Everyday, Crazy, Life

It has been a while since I have posted, I hope to start posting more regularly again. Callie is doing awesome, I have no complaints! Callie finished up 1st grade in May and is enjoying her summer. She is in the pool every chance she gets :-) She is looking forward to school starting back in August, she misses her friends very much! Callie recently started tumbling and loves it! It is really good for her and pushes her to build her endurance, which needs! It is tough for her sometimes, but she pushes on. 

So, health wise how is Callie? I can honestly say, probably at her best :-) Her heart is stable and she will see her cardiologist at the end of July. From there I will be scheduling her heart catheterization to go to California for Jan. 2016 which is exactly 2 years out from her Glenn procedure. Dr. Hanley wanted her to have a cath 2 years out to see where she stands. Callie next surgery would be her Fontan, 2 years ago when she had her Glenn, she wasn't a candidate for the Fontan.....but we are praying with time she will become one just like she did with the Glenn. Onto her next battle, the vomiting syndrome.....we seem to have a good handle on that. Callie's last episode was back in January, since then we have been able to get it under control with her meds and a very strict lifestyle. It is tough but it beats watching your child vomit for a week straight. Never take for granted just being able to pick up and go out of town or staying out late for a special event with your child. Callie cannot do things like that and it really sucks at times, she has to be in bed before 8pm, going out of town is a big stressor for her, especially if we all aren't together as a family. Just little things you would not think about are a big deal for her. But, the good news it one day she should outgrow it! I just remind myself this is only temporary ;-) 

When you think about 2 years, it seems like a long time but living it, it is like a snap of the fingers! If that makes sense....lol! I say this because this coming Jan. is 2 years since Callie's Glenn, her 9th heart surgery and we will head to California once again. I just can't believe it has been 2 yrs. and once again we will be facing all this all over again. Yes, there is never a day that goes by that I do not worry about her, I am constantly worried. But, being in California really puts it all in your face. Someone, commented to me the other day, that I deserve praise for all we have been through, all the traveling for her surgeries, etc. And this is coming from someone who has a child with CHD and other health complications. Here is how I see it, each and everyone of us has our "normal" or crazy life we live, however, you want to see it ;-) For us, being prepared to travel at a blink of an eye, is our normal/crazy life, I do not even think twice about it anymore... we have adjusted over the past years and it is a journey that God has put us on and there is a reason, it might be tough at times and I always wish that Callie didn't have to go through what she goes through but none of us were promised a life without pain and heartache. But God is with us and he is faithful and good!