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.

Sunday, October 9, 2011

Callie had her appt. with Neurology and it wasn't exactly what I was expecting. The doc didn't have much to say. He did prescribe her another medication (Neurontin), to see if it would help during her cycles. He does what to do an MRI of her brain, to totally make sure there is nothing from a Neuro standpoint that he needs to treat. If that is clear, then Neurology doesn't care to see her back. Her MRI is schedule for this Friday. So, we shall see.

Callie's last cycle ended Sept. 24 and she was doing great, back to her giggling self. Until this past Friday, when it all started again. My heart breaks when this starts, it is so hard to watch because there is nothing that really helps. Callie cannot afford to be going through all this, she is so skinny. Everytime she starts to put weight back on, this starts and then she loses it all again.

She sees Cardiology on Wednesday for a regular check up and then MRI is schedule for Friday. Callie will follow Cardiology every 2 weeks until we return to CA. Please continue to pray for her heart and that January holds good things for her. Going back for another surgery terrifies me but I know that this could be "The Surgery" we have all been waiting for and it will be so great for her!

Please pray that this cycle is short for her. Also, please pray for Moriah and her parents, Victoria and Justin. momentswithmoriah.blogspot.com Moriah is in the hospital with a fever and they are hoping to figure what it is and get her back home asap.

Thank you for checking in and all your prayers and support, it all means a great deal to us.

Ending on this note, a sweet friend recently posted a post which started with this verse,

Give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18

Since having Callie, I have always kept this in sight but lately have struggled greatly with being thankful as we deal with our circumstances on a daily basis. Thank you Terra, for sharing and opening your heart to us.

2 comments:

  1. Hey girl, I have been thinking about you ever since we last talked. Know that in the midst of our chaos, your sweet girl has been on my heart. I hope that the Neurontin brings some relief. Dont be discouraged if it doesnt do anything at first - it always takes one month to notice its effectiveness with M. Continued prayers for you all. Lots of love, Vic

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  2. we hope callie is feeling better-we hope to see her this weekend- it breaks my heart to hear her on the phone so sick in the background,she has been thru so much already. hopefully the neurotin
    will make a difference. thinking of all of you
    always

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