Learn About Callie's Journey with CHD

My photo
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.

Tuesday, October 25, 2011

Meet Pebbles!

Callie was sent by "Dreams Come True" to spend some time with the dolphins at Marineland about a week ago!! What an exiciting day for Callie. For those of you who don't know, Callie is in love with dolphins!!

As soon as they put the lifevest on her she ran for the water! She wasn't scared at all....she really enjoyed herself and talks about going back all the time.

She thought it was hilarious that is she splashed Pebbles, Pebbles splashed her back:)

Callie has been doing very well and I pray for this trend to continue. We have been vomit free now for 2wks and so far this month only had 1 short cycle of 5 days.

Check back soon for pics of our day at the pumpkin patch:)

One last pic of Callie and Pebbles.

Thursday, October 13, 2011

Meet The New Cleaning Lady!!!

I employed some cleaning help this past week, isn't she adorable?
She cleans better than some adults I know!! Even if the vacuum is a big as her;)

Callie is over her cycle!! YAY:) I think we are starting to get a handle on these cycles, praise the Lord. She has had more good days this month and her last cycle was only 4 1/2 days. Thank you Victoria, for being someone I could talk to about this and for recommending the Neurontin.

Her cardiology appt. went well, except for the fact my 4yr. old weighed 22lbs.!! Yikes! But, how can anyone keep weight on puking 20 times an hr. Now we work to put the weight back on, so far she is doing an excellent job of that. Filling her tummy with pizza, ice cream and all the things we shouldn't eat but Callie most certainly should;) Callie will not have her MRI tomorrow because she needs anesthesia for it and well she isn't at the stablest point with her heart so, Dr. Lacey doesn't feel comfortably putting her under. Which I totally respect that and grateful she is being so cautious will my baby! Callie will probably have this test done in California when she has her heart cath.

Thanks for checking in!

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.