Savannah Has Heart - Our CHD Journey

Savannah had her Autism reevaluation this morning. She was diagnosed previously with a provisional autism diagnosis because they could not complete the cognitive portion of the test and told us to come back in 2 years. It’s been 2 1/2 years and we were finally able to be seen.

They still could not fully complete the cognitive portion but was able to do most of it and was able to give her a level 2 diagnosis of Autism. They are recommending in home ABA therapy to help out with toileting and her defiance, if you will, to stay on task.

When Savannah doesn’t want to do something or is done with something there is zero negotiating that can be done to get her to get back on track.

DiGeorge syndrome (also called 22q11.2 deletion syndrome) is one of the strongest known genetic risk factors for autism. Research indicates that roughly 15% to 40% of individuals with DiGeorge syndrome meet the behavioral criteria for an Autism Spectrum Disorder (ASD) diagnosis.

Savannah is a Girl Scout Daisy! 🌼

This is her first year selling cookies.

This weekend is National Cookie Weekend! 🍪💚

This means it’s the last weekend to get the cookies shipped to you. If you buy 8 or more boxes online through this Sunday, February 22, you get $6 OFF shipping!

Click the link below to order! Cookie season is coming to an end. Get them before they are gone until 2027!

https://digitalcookie.girlscouts.org/scout/savannah384963

Cardiologist Update: 🫀

I’m getting teary eyed as I write this. Savannah wasn’t supposed to see cardio until end of next month, but got a call from her cardiologist last Wednesday, to let us know that he is leaving Children’s this month! I hurried up and made sure that she was able to get in to see him one last time. He was a Godsend after her last cardiologist left! We will miss him terribly!! Dr. Arar you will forever be a part of Savannah’s journey and our family!

As Savannah’s heart goes, she is continually stable. Her numbers are gradually climbing but again she shows no signs of heart failure. As long as she continues this way we can hold off on surgery.

We will meet her new cardiologist in 6 months. He has been highly recommended by those that know her and us best and I know God’s got her and our family always! I trust in His plan even when we don’t understand.

Semi annual Cardiology update! 🫀

Savannah had her cardiologist appointment today and got to see her favorites 🥰 (not pictured Chelsea and Ms. Sharon; next time!)

Her heart function is still good and no symptoms of distress yet, despite her Left Ventricle Outflow Tract obstruction gradient increasing. Unless she shows signs of fainting or shortness of breath, we will continue on this course of monitoring every 6 months until they deem in necessary for her to have surgery.

God is good and she’s been able to live her best life! We will continue making lots of memories and allow her to grow big and strong for as long as God and her heart allows!

Cardiologist update: 🫀

Savannah’s numbers are still stable and has been cleared for another 6 months!!! Thank you Jesus!! 💜

We did learn that Savannah’s surgeon, Dr. Jaquiss is no longer at Children’s. So her cardiologist will be presenting her case to Dr. Davies. I’ve heard nothing but good things about him.

Thank you to all who have been praying for her and checking on us. She is thriving and doing so well. So thankful for the time we have for her to just be a kid a grow!!

Happy 4 year heartiversary from your 5th ohs Savannah!! I am in awe of God’s goodness and how far you have come in the last 4 years! I love you big baby goose!

“Dr. Savannah” had a ENT appointment on Wednesday. DiGeorge kiddos have a higher chance of hearing loss, so we have to stay on top of it and catch it early if/when it happens.

The doctor was very pleased with her hearing test results! She just got over having swimmers ear on the left side and still received normal results at speaking level! There was one part of the test she failed in her right ear and they didn’t test the left because of the infection. They want to give it time to heal. We will retest in 6 months!

Savannah had a neurology check up yesterday. The doctor wants to do a MRI since it’s been over 4 years since her last one. They just want to make sure that after her stroke in 2018 (cause unknown) that her brain rewired to reroute proper blood flow to her brain. It will have to be sedated and with cardiac anesthesia because of her history. Anytime these kiddos have to go under is risky. MRI will be done in December.

THREE months to Christmas!! I cannot even believe it!!

I am raising money to provide some goodie bags for the families that have to be in the Children’s CVICU and heart floor for the holidays! 🎄🎅🏼

There are four ways to donate!

1. If you want and can you can Venmo me .

2. You can also purchase a Savannah’s Squad t-shirt. Link below!

Https://teespring.com/savssquad =369&cid=6512&sid=front

3. If you would like to order zipper hearts, please DM colors and quantity. They are $7/ea. These are great as gift tags or ornaments that can be specialized for any occasion ie. sports teams, baby shower, wedding shower, dance, graduation

4. Here is an Amazon Wish List if you would rather purchase straight from there.

https://www.amazon.com/hz/wishlist/ls/3PHHFXLEZEPK0?ref_=wl_share

I am needing enough to make bags for 70 families. I donate to Children's Health Dallas and Medical City Children’s Dallas.

If you can donate, we would really appreciate it!!

We have been in the hospital for several of the holidays and it can be very lonely. My focus is on the caregivers that are at the hospital with their loved ones to let them know they are not alone!

The kids are always so well loved during these times and it’s amazing to all who give to make their time in the hospital so special.

Being a caregiver, it always made me feel seen when i was gifted a little something as well. That is where my heart is at.

Happy 6th Heartiversary, Savannah!

I had only held her twice in the first 6 days of her life and then I had to entrust her completely to God and the amazing heart surgeon to repair her heart defects. It would be another month after that before I got to hold her again. She then had three more heart surgeries before she ever came home!

She’s been through it! God has been so faithful and good through it all! 💙❤️