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, January 15, 2015

Almost a year later....









Well it has been quite some time since I have updated on here. I can't believe how fast time seems to slip away....Since my last update in February, Callie started 1st grade in August, growing up way too fast!






Then she welcomed her sweet baby cousin, Skylar. Callie loves her more than words describe!

 
 
September 4, 2014

My baby turned 7!!! She had a frozen B-day Party with Elsa and Ponies!!




Multiple Check ups during the year, with Dr. Lacey, Callie's cardiologist who love and adore!



Of course, Callie has to act silly during pictures;-)

Callie is doing very well from a heart standpoint, she is stable and no major changes have occurred in this past year. We are hoping to make it to Jan 2016 and at that point she will need a check up in California.



Christmas!!!!!!



We tried visiting Santa for a Christmas pic, but this was the only pic we achieved, while visiting Santa. Callie has always been afraid of him and we have yet to get a pic with her sitting with him. Maybe when she is 18, we will finally get that pic! LOL!!!

Overall, 2014 was a great year for Callie. She was able to have her Glenn procedure in January, which went so well. We are so thankful that her surgery went off without a hitch and her recovery was awesome. She finished out Kindergarten and had a great summer!
August, she started 1st grade and has been doing just marvelous. I am so proud at how well she is doing despite all the challenges she has faced.

Speaking of challenges, as most of you know, her Cyclic Vomiting Syndrome has been very hard to control for about the past 3 yrs. May 2014 she had her last episode up until December - which was so awesome!!!!! December 12 she started with another episode which was triggered by a cough, the cycle was brutal as always. It ended Dec. 22 and then she turned around and had another one start on Jan 2 that one lasted another week. We have her on maintenance and preventative medications but the key to keeping it under control is lifestyle. Which is very difficult on our family at times. Your just not free to be out and about as much as you would like, it controls you! Callie has to be in bed by 730p every night, no exceptions, she can't get up too early , you can't drag her all over creation running errands, a cold, cough, certain foods, the list goes on and on of her triggers. So right now because she just had 2 episodes back to back, we have to super careful not to trigger another one. Talking about walking on eggshells, it is exhausting and frustrating at times because she misses out on so many things at times.

But, as frustrating as it is, we are thankful for how healthy and stable she is. God has blessed us with countless blessings this past year, his love is awesome! Difficult days, I pray for him to remind me that his plans are perfect, they may not be the plans I have for myself but if I just trust him and follow him, he will provide the best for my family and I.

Thanks for checking in and I hope to be better about updating the blog this year :-)

1 comment:

  1. I am so glad to see an update on Callie and very glad to hear that for the most part all is going so well.

    ReplyDelete