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, August 29, 2013

Kindergarten Time!!!!!






 

This big girl started her 1st day of Kindergarten almost 2 weeks ago. I can't believe she is in Kindergarten, time sure does get away from us :-( And to think she will be 6 years old this coming Wednesday!! My baby is just growing up way too fast.

She is adjusting to her new school and I pray that things will all fall into place very soon. But, at the current moment we are hitting a few bumps in the road. Callie has 21 other children in her class and it is improving to be not the best situation for Callie. We are finding she isn't being engaged enough and seeking attention. Seeking attention meaning doing things like saying, she is sick all the time and trying to throw up. As most of you know the vomiting syndrome Callie has is brought on my stress and anxiety so we have to very careful not to bring that on. So at times we are walking a fine line. We were very blessed for her to attend a private school last year for Pre-K and that was an awesome setting for Callie and the teachers were phenomenal with her and student to teacher ratio was very low so she received the attention she needed educational and health wise. I fear she is just not going to get the attention she needs this year in a public school setting and it is breaking this Mommy's heart and stressing me out. This little girl has came so far and she deserves the very best . Unfortunately, we are just not in the financial situation to be able to send her to a private school again this year. I pray daily for the Lord to make a way for Callie to attend a school that is better for her and her needs. He knows the desires of my heart for my sweet girl.
 
Trust in the Lord, and do good; dwell in the land and befriend faithfulness. Delight yourself in the Lord, and he will give you the desires of your heart.
Psalm 37:3-4

Monday, August 19, 2013

Cardiology Visit w/our fav doc :-)

Callie had her 3 month check up with Dr. Lacey about 2 weeks ago. Lets just say, "Callie is doing AWESOME!!" Callie has put on 3lbs. which makes her 34lbs and is about 42.5in. Her oxygen remains basically unchanged, which means she is just adjusting well to her shunt and doesn't seem to be out growning it at this moment. Callie is doing so well, that Dr. Lacey doesn't want to see her back for 6 months!!! Which we are going to miss seeing our "FAV" Doctor all the time, but thankful Callie is doing so great.

 
 
 
 

I will be calling California in the next month or so to give them an update on Miss Bossy Pants!!  Since we are coming up on 1 year since they saw her last and generally they do not like her going over a year without a check up from them. So, we will have to wait and see what they have to say. Callie needs her next surgery which is her Bi-directional Glenn but her surgeon wants her to outgrow the shunt she has before they perform her Glenn, so that is why we are on this waiting game before they will do that surgery. Which will take the break from surgeries and relax in these moments that Callie is doing so great. Praising the Lord all while for all he has done for our little girl and continues to do.
 
 





Friday, August 9, 2013

Cyclic Vomiting & Dr. Perszyk

A couple of weeks back Callie saw Dr. Perszyk for her Cyclic Vomiting Syndrome. Dr. Perszyk is a Multi-specialty doctor and most people know him for his work in genetics. But, he also specializes in this pain in the behind vomiting syndrome Callie has acquired.

One word about him "AWESOME" :-)  I loved him, he was so good with Callie and had so much insight into this syndrome. He started Callie on a new medication on top of the others she is on for this and we will see how this works. He gave us suggestions on how to deal with her everyday anxiety and stress with school, hospital, etc. He was a wealth on information and I am so thankful I followed my gut and took her to see him. I hoping with his help we can pretty much put this to bay for the most part.

The positive part is she has been doing great all summer long with no cycles. So, I am hoping with his pointers and this new medication this school year will be a successful one! Yes, my BABY will start Kindergarten in a little over a week:-( Time goes by in a blink..... she is excited but her Mama is not so excited. LOL

We will have a follow up appointment with him in October to see how she is doing with starting school and all the adjustments.

Stay tuned for the next update from her appointment with Cardiology and our favorite doctor;-)

Off to get Callie from Dance Camp....