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.

Monday, December 28, 2015

1 week till go time

Callie and our family had a wonderful Christmas... Miss Spoiled received more than her fair share of the gifts and was so excited for Christmas Day!

California is a week away, not too excited for that but ready to get it over with. Huge amounts of stress always follow the week before and leading about to go time. Not only will Callie be having her heart cath, she will also be having another small procedure. She is having her feeding tube removed from her stomach and they will stitch it up while she is under anesthesia. While this seems so simple, please pray for no complications. Having dealt with all what we have dealt with the past 8 years, we know no matter how simple the procedure there are still many risks and possible complications.

Please just pray all will go very smoothly and for awesome results :-)

If you feel led to donate to our family, you can simply donate by the button on the right hand side of the page.

Thank you for all your prayers and support!

Saturday, December 12, 2015

Sweet, Sassy girl & her upcoming trip

Well Thanksgiving flew bye, we had wonderful time with family, lots of yummy food and good laughs! Mostly importantly we have so much to be thankful for.

This is one of my most recent favorite pics of Callie, it captures so much of who she is as a little person. She acts so grown up at times for her age and is full of so much sassiness!
Callie is doing awesome! She is super excited for Christmas and has her list all ready, even though she is absolutely scared to death of Santa! LOL! We do not have one picture of her with Santa, she has always been terrified. Figure by the time she is about 10 we will probably be able to get a pic by then ;-)

Now to the not so fun part of my post. Callie has an upcoming trip to California the 1st week of January. She needs a heart cath to assess her current heart status and to see where she stands for her next stage of heart surgery she needs. I am hopeful we will hear good news that she is a candidate for her next stage. But, with that said, I also hope she can wait another 6months at least before she has to go through another heart surgery. Over the next month, please pray she stays healthy and avoids all the germs going around. Sickness is always the biggest fear for her at anytime but even more so when she has an upcoming procedure. Also, please pray for her stress and anxiety, this is a big one for her, especially with her vomiting syndrome. We are not focusing on this upcoming and trip, she knows she is going but we do not talk in depth about it. Her worry should not be this trip, her worries should be remembering her songs for her upcoming Christmas play ;-) Which by the way, she is so excited for!

Our main prayer requests are as follows, if you would like to pray for Callie and our family:
*Callie remains healthy
*heart cath results are positive
*Callie experiences as little stress & anxiety as possible
*funds are provided for upcoming trip

We never like asking for help, it is not an easy thing to do, but we are not millionaires either and these trips get expensive. Just the cost for a hotel is $165/ a night , might seem unbelievable but it is just the cost of staying in that area. We have already been told it is very unlikely we will get into Ronald McDonald House due to the volume of patients right now-which is always the case there. One of our biggest expenses is getting the plane tickets right now. If you feel lead to donate, there are 2 ways, on the right hand side of her blog is a donate button which is through paypal. Or you can go to this link
which is a fundraiser that has been setup for our family to help with expenses.

We are so very grateful to all who have supported and stood by our family over the years. All we want is the very best for Callie, for her to have a full and happy life. Again, please pray keep Callie in your prayers, that this trip will be good and full of positive results! Merry Christmas :-)

Sunday, October 4, 2015

Black and white....why is it when you see something on paper, in black and white, it hits you this is real? Exactly how I am feeling, as this weekend I received Callie's paperwork confirming her upcoming trip to California which is for sure the 1st week of January. Even though, we have been doing this for 8 years now, it never gets easier. Sometimes I think, well No - am 100% positive I have more anxiety now about these trips then I did 8 years ago. Old age? Probably! LOL! And knowing what to expect and then there is the worry of the unknown.

 January she will for sure have her heart cath to see exactly where she stands. And she has a surgery date schedule in case she needs it. I tried to say, " Can we just schedule the cath and then worry about surgery if she needs it?" But, they wanted her to have a surgery date already in place :-/ Which I totally understand why but hate seeing those words on paper. As would anyone.....not easy.

Callie does need her next stage of surgery. When will that be, only God knows - could be January, could be 6 mths from then or a year from then. I just want a good cath report and to hear she is on her way to having her next stage at some point in the future, I really do not want her to have a surgery in January but that we will just have to wait and see. I was reminded today in Church today, we cannot control what life throws out us - while I know this. I needed the reminder, all I can do is remain strong, face it head on and put my hope in God. It's a struggle for sure because I want to control it all but the truth is, I can't control any of it - its all in his hands. I have to remind myself of this everyday, sometimes every hour and the moment I send my child into that operating room, I have to remind myself of that every second and pray like crazy.

Miss Priss is doing simply wonderful, so very grateful! She had her 8th Birthday in September and is loving school.  She cannot wait for Halloween so she can dress up :-)

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!

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.


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 :-)