• Home
  • About Me
    • Featured
    • Coco’s Caravan
  • Contact
    • Subscribe to my blog
  • Motherhood
    • My favorite Affordable Baby and Kids Clothing Stores 2021
    • Five Toddler Toys My Boys Love to Play With
    • 8 of the best must have products for twins
    • 13 of The Best Tips for Flying with a Toddler
  • Lifestyle
  • My Story
    • My Story
    • My Birth Story
    • My Story (told by my dad)
    • Justins 2nd Death Anniversary
    • Two Against One
  • Courses
  • Community
    • Their Stories
    • Facebook
    • Instagram
    • Pinterest
    • YouTube

Coco's Caravan

Meet Ansley: Twin mom fighting to find a cure for her daughters epilepsy

in Caravan Community on 02/06/22

Welcome to Coco’s Caravan Community. I started this community in hopes of helping others. After sharing my story and hearing back from so many others who were dealing with similar trials, I realized we are not alone. We are here to uplift and help each other make it through each day. I wanted to create a space here on my blog where they can share their stories and help others who might be going through a similar experience. Continue reading below to learn about Ashley’s story.

Table of Contents

  • Ansley’s Story: Trying to find a cure for her daughters epilepsy
  • What was the hardest thing you went though during this time?
  • What advice do you have for people going through a hard time?
  • What helped you the most during your trail.
  • Share an update on your life now. 
  • What Quote or motto got you through this difficult time?
  • Leave an encouraging comment below for Ansley. You can follower her on IG HERE
  • READ MORE CARAVAN COMMUNITY STORIES HERE

Ansley’s Story: Trying to find a cure for her daughters epilepsy

Trying to find a cure for her daughters epilepsy

In 2017 we lost our first child, a boy, to a rare genetic disorder called Meckel Gruber Syndrome. It’s 100% fatal and we were absolutely devastated.

We tried for one year to get pregnant again, but we were having no luck and knew we had to turn to IVF. I started documenting my infertility and IVF journey on Instagram and found such an amazing support group there. IVF felt like such a long journey with 3 rounds, but we finally made it to a place where we felt we had enough embryos to transfer one. We were shocked and thrilled to learn that our one embryo had split into two.

We had identical twin girls and named them Sydney and Savannah after some of our favorite places we had been together as a couple. We were so happy with our new little family. When the girls were four months old I got a call from my nanny while I was at work.

“You need to come home. I think Sydney is having a seizure and is starting to turn blue.” My husband and I both rushed home from work and took her straight to the Children’s hospital in downtown Orlando. After multiple test, the doctors confirmed that she was having a grand Mal seizures.

Trying to find a cure for her daughters epilepsy

The next few months were a blur, but as Sydney’s seizures got worse so did her development. Sydney was having up to 20 seizures a day and medication was not working. At 10 months old Sydney had such a rapid decline that she was put on a gtube (a tube in her stomach) because she stopped eating. She spent a month in the hospital and was sent home with little hope. We were asked if we wanted palliative care and after we declined they sent us home with more medication, and little hope.

We didn’t want to give up and started to do PT, OT, and speech therapy. We found a new neurologist who would help us navigate the unknown.

In January of 2021, a year after her seizures started we requested yet another EEG (her 11th) because her seizures were presenting differently. During this EEG doctors saw that all her seizures were firing from one place, which was something they couldn’t pinpoint before. They decided to set up an MRI for the next week.

I remember that call so vividly. Seeing the neurologist’s name on my phone screen at 7 pm on a Friday made me feel like it was something big. “We found it!” she had said. “We found frontal cortical dysplasia in her left front temporal lobe. She’s going to be rushed through to neurosurgery and we will take it out.”

I fell on the floor crying happy tears. Hearing that my child was going to be a perfect candidate for brain surgery to get rid of her seizures was the most amazing news we could have asked for. Sydney had her successful brain surgery in February of 2021 and has been seizure-free since that day. She is still catching up developmentally and we work with her every day but her amazing recovery has been nothing short of a miracle.

What was the hardest thing you went though during this time?

The hardest thing I went through during this time was watching my daughter in pain and suffering and not being able to help her. Sydneys seizures were so terrifying. She would stop breathing and turn blue. All we could do was time them and call 911 if they went over 3 minutes which we did often. We would have so much hope every time they’d switch her medication only to be so let down when it didn’t work.

What advice do you have for people going through a hard time?

Surround yourself with people who are supportive and help you out. I can’t count the number of times I would go down a dark hole and my friends and family would help me out. Also, always search for a second opinion. You do not have to settle on the first doctor we went through multiple doctors until we found one who really listened to us and helped us.

What helped you the most during your trail.

My husband was a huge support and would sometimes plan girls day for me to spend the day with my friends. Since we had moved during the pandemic he would make sure I spent time with my friends.

Share an update on your life now. 

Sydney is thriving and in a school that helps her with PT, OT and speech. She started recently crawling and we hope she will be walking soon. She has been having an amazing recovery.

View this post on Instagram

A post shared by Ansley • IVF • Twin Mom (@ansleysadventures)

What Quote or motto got you through this difficult time?

“Advocate like a mother”

Leave an encouraging comment below for Ansley. You can follower her on IG HERE

READ MORE CARAVAN COMMUNITY STORIES HERE

Tweet
Pin4
Share
4 Shares

Add a Comment

« Sweat App is my favorite workout: My full review
Took the Caravan on a fun Disneyland trip 2022 »

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

welcome
Hi I’m Jenn, but my friends call me Coco. I recently lost the love of my life to cancer. I’m now a single mom of IVF miracle twin boys. I hope to help others as I share my journey as a new widow and mother of twins.

Instagram

cocoscaravan

#worldcancerday #worldcancerday2023 #cancersucks # #worldcancerday #worldcancerday2023 #cancersucks #cancerawareness #cancerfighter #fuckcancer #cancer
Tomorrow is #worldcancerday so I wanted to write a Tomorrow is #worldcancerday so I wanted to write a blog post sharing tips on how to support a friend with cancer. 
Comment the word “support” to get a DM with the link to the blog post and chemo care package list. #cancer #supportcancer #cancersupport
Comment “clipart” below to get a DM with detai Comment “clipart” below to get a DM with details on how to add clipart to your photo! (Clipart no space) #clipart #photoshoot #photoshootideas
#ad Life can be stressful, but thankfully, insuran #ad Life can be stressful, but thankfully, insurance doesn’t have to be with @statefarm.
This one is super easy and fun to do! Comment the This one is super easy and fun to do! Comment the word “Heart” below to get a link to your DM. I’ll share all the details on how you can do this photoshoot at home! #valentines #valentinesdayphotoshoot #vdayphotoshoot #kidsphotoshoot #valentinesday
So funny how Utah is known now for the weird Soda So funny how Utah is known now for the weird Soda drinks. I love them so I’m here for it! 🙌 I blame @kerimae2 for teaching me this gas station trick! Coconut syrup and true lime packets!  #soda #coke #utahsoda #utah #sodadrinks #stanleycup
Step by step instructions on how to make these ado Step by step instructions on how to make these adorable Valentines day cards on the blog! 

Comment “card” to get a DM with a link to the blog post! I’ll teach you how to make these! 

#valentinesday #valentinesdaycards #diyvalentines
Also check out my account @cocoscaravancommunity w Also check out my account @cocoscaravancommunity where I share stories and talk more about grief. If you want to share your story send an email cocoscaravancommumity@gmail.com
Take the picture!! Save the memory! I’m going to Take the picture!! Save the memory! I’m going to keep talking about this until I go blue in the face! I have every picture memorized at this point. I’ll never have a new photo of Justin. Every picture I have of him is special. I have so many but still wish I had more!  Please take the photo and save the memories! #takethephoto #takethepicture #savememories #savingmemories #keepingmemories #photos #preciousmoments #lossofalovedone #griefjourney #griefandloss #youngwidow
Got the boys cameras for Christmas and it has been Got the boys cameras for Christmas and it has been the best gift! I didn’t realize how cute it would be. Fun to see the world through their eyes! ❤️

Comment “camera” to get a DM with the link to the camera
#playfood #melissaanddoug #playfoodforkids #toytip #playfood #melissaanddoug #playfoodforkids #toytips #momtips #toys @melissaanddougtoys
Link in bio: Click on my courses! What stresses yo Link in bio: Click on my courses!
What stresses you out about photo organization? Can you find photos quickly if you need to find a certain one? I can help you out! #photo #photoorganizing #photoorganization #newyeargoals
When people say social media is all bad, well I ha When people say social media is all bad, well I have to show them this video and say I disagree. It has connected me to other widows, given me purpose, and has given me a platform to help others! 
Read my story link in bio ⬆️ #helpingothers #shareyourstory #socialmedia #grief
**NEW BLOG POST** link in bio to read what I learn **NEW BLOG POST** link in bio to read what I learned in 2022 and also read what my followers learned. #lookingback #whatilearned #whatilearnedtoday #2022recap
Use this audio with a favorite video of you and yo Use this audio with a favorite video of you and your kids! #motherhood
Read my story link in bio⬆️ #griefandloss #los Read my story link in bio⬆️ #griefandloss #lossofalovedone #grief #widow #griefjourney
Link in BIO to learn how to make your one second v Link in BIO to learn how to make your one second video and how to add music! #onesecondeveryday #onesecond #cocosonesecondvideochallenge Tag me in your videos!!
#grief #griefduringtheholidays #lossofalovedone #g #grief #griefduringtheholidays #lossofalovedone #griefjourney #griefsupport #divorcegrief #divorce #widow #familysupprt
Link in bio to purchase or get more info ⬆️⬆ Link in bio to purchase or get more info ⬆️⬆️
PROMO CODE: cocoscaravan ($40 off single box) 
Fresh meals made the day before they are delivered. No chopping or cooking needed. All you do is warm them up in the microwave. You have a perfectly made meal for your family.

If you need another reason to love Feastbox more, for every box you purchase for your family, they give a meal to a family in need. Feel good about what you’re eating and how your’e giving back #fullofhope #feastbox @feastbox.meals
Watch the full interview link in bio ⬆️ #highl Watch the full interview link in bio ⬆️ #highlight2022 Hands down the highlight of my year was meeting @katiecouric and working on this project with her. The toll of a cancer diagnosis. @katiecouricmedia 

I feel so grateful to have meet these amazing women and be a part of this. Helping people feel less alone in the cancer world. #cancer #cancerdiagnosis #cancerspouse #cancersucks #cancersupport
Load More... Follow on Instagram

Popular Posts

How to support a friend with cancer

How to add clipart to photo

The Best Play Food and Accessories

Categories

  • Caravan Community
  • DIY
  • Home Slider
  • Lifestyle
  • Motherhood
  • My Story
  • Travel
  • Uncategorized

Join Us on Instagram

cocoscaravan

#worldcancerday #worldcancerday2023 #cancersucks # #worldcancerday #worldcancerday2023 #cancersucks #cancerawareness #cancerfighter #fuckcancer #cancer
Tomorrow is #worldcancerday so I wanted to write a Tomorrow is #worldcancerday so I wanted to write a blog post sharing tips on how to support a friend with cancer. 
Comment the word “support” to get a DM with the link to the blog post and chemo care package list. #cancer #supportcancer #cancersupport
Comment “clipart” below to get a DM with detai Comment “clipart” below to get a DM with details on how to add clipart to your photo! (Clipart no space) #clipart #photoshoot #photoshootideas
#ad Life can be stressful, but thankfully, insuran #ad Life can be stressful, but thankfully, insurance doesn’t have to be with @statefarm.
This one is super easy and fun to do! Comment the This one is super easy and fun to do! Comment the word “Heart” below to get a link to your DM. I’ll share all the details on how you can do this photoshoot at home! #valentines #valentinesdayphotoshoot #vdayphotoshoot #kidsphotoshoot #valentinesday
So funny how Utah is known now for the weird Soda So funny how Utah is known now for the weird Soda drinks. I love them so I’m here for it! 🙌 I blame @kerimae2 for teaching me this gas station trick! Coconut syrup and true lime packets!  #soda #coke #utahsoda #utah #sodadrinks #stanleycup
Load More... Follow on Instagram

Copyright © 2023 · Custom design by How Sweet Designs

Copyright © 2023 Jennifer Hanks · Custom design by How Sweet Designs
  • Disclosure
  • Privacy Policy
  • Term and Conditions