High Fives for Stacey

High Fives for Stacey Stacey is 19, has Agenesis of the Corpus Callosum, 3q chromosome deletion & seizures. Some days it feels like we're going nowhere fast.

This page is the springboard for a non profit serving other families living with disabilities. Other days it feels like it's all going too fast! This page is an effort to keep track of it all and to find encouragement on the hard days. We've been so blessed through the years, we want to give back. We have started a non-profit to serve families with special needs. High Fives for Stacey Inc. was for

med May in of 2014. :)

We are starting a new program with her. It's a Neurodevelopment program and is hours and hours a day of exercises we do with her. We get tired and frustrated and we get excited and motivated. Join us where we're at! :)

So the nut shell: In July of 1999 at 3 months old, Stacey was diagnosed with Agenesis of the Corpus Collosum, a deletion on Chromosome 3q (12-21) , Chronic Lung disease, She was on oxygen for a year, Mitochondrial dysfunction, Hypotonic Cerebral Palsy, Global Delays, Delayed gastric emptying, Sleep apnea caused by slow brain waves during sleep as well as obstructive from low muscle tone, and chronic cuteness. :)

Exactly 4 years later she had her first seizure. It lasted for several hours and resulted in an 8 day stay at Children's hospital in LA. She was in an induced coma for 4 of those days. She has since been diagnosed with Status Epilepticus - meaning her seizures can be very hard to stop and usually last for hours. She also has sub-clinical seizures meaning we don't see them. All we see is when they get strong enough to make her sleep and throw up. She had pneumonia 18 times in 2 years. It was to the point where the pulmonologist was preparing us that each time was riskier and it would likely take her life. It's been a long road of ups and downs, tears of joy and tears of sorry. It's been a new kind of normal for us and we thank God for being the Great Physician that has all of our days numbered, regardless of what the medical profession says! :) Dr's can diagnose, but only God can prognose. :)

I really appreciate how Watson And Associates has shared info lately about the RE market. Today he is having a cute con...
04/12/2020

I really appreciate how Watson And Associates has shared info lately about the RE market. Today he is having a cute contest for the kids to participate. Click over to the comments of his post and like Stacey's picture comment so she can win some new goodies to keep her busy!

Easter Coloring Contest! Color in the easter egg that is linked here: https://bit.ly/2UZCXZP

Comment your colored picture below from the link and whatever individual picture gets the most likes will win!

Entries will be closed Sunday at 8pm. Each individual picture's likes from Instagram and Facebook will be counted.
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A total of 3 winners between the Instagram and Facebook posts will be announced on our pages on Monday, April 13th.

Prizes:
1st Prize - $50 Gift Card
2nd Price - $30 Gift Card
3rd Price - $20 Gift Card

P.S. Share this post and have your friends like your commented picture!

First day of online class for Stacey. This will be interesting lol.
04/06/2020

First day of online class for Stacey. This will be interesting lol.

AV peeps - If you know someone with disabilities that is in need of supplies related to the disability, and is strugglin...
03/25/2020

AV peeps - If you know someone with disabilities that is in need of supplies related to the disability, and is struggling due to quarantine, High Fives for Stacey Inc. can help. We do not give cash, but can pay a bill for supplies such as medication, caregiving, etc. Have them contact us through

High Fives for Stacey Inc provides support to special needs families in hopes to provide both practical and emotional support for each one's unique circumstances.

03/02/2020

I cannot believe Stacey will be 21 on Thursday!

12/30/2019

Stacey loved the snow! Big brother got a workout! 💪

We tried for years to help Stacey use a communication devise. She never got the hang of it. In August we switched to pic...
12/30/2019

We tried for years to help Stacey use a communication devise. She never got the hang of it. In August we switched to picture cards. This new APP is essentially digital picture cards and it's FREE!

A DAD who made an app to help his autistic son has made it public to everyone for free.

Enjoying an unusual snowy Thanksgiving! Have a great day everyone!
11/28/2019

Enjoying an unusual snowy Thanksgiving! Have a great day everyone!

It's time to register for Night to Shine again!🎉 Yes, she'll be wearing the same dress as the last 2 times. I told you w...
11/27/2019

It's time to register for Night to Shine again!🎉 Yes, she'll be wearing the same dress as the last 2 times. I told you we'd get our monies worth! 😂 Register to attend or volunteer here: https://facebook.com/events/2462483317340533/?ti=as

3 years ago I gave Stacey her last dose of Keppra - her seizure meds. I doubt I will ever stop looking for signs of sei...
10/10/2019

3 years ago I gave Stacey her last dose of Keppra - her seizure meds. I doubt I will ever stop looking for signs of seizures. When she is nauseous, tired, aggressive, irritable, even when she is overly happy (yes, seizures can cause that). I will never walk into her room in the morning without holding my breath, fearing she's had a nocturnal seizure. When she is too quiet, I have to go look, wondering if it's a seizure. It's ingrained in my routine.

She started at 4 years old. In May it was 5 years since her last one! When she had them, they were huge. Lasting hours, requiring an induced coma, sometimes for days. Numerous ambulances rides. Giving her "rescue meds" (suppository) at any given time.

Her meds made her violent and aggressive and so volatile. Now she is 20, med and seizure free, and really is so sweet. Don't be fooled, she is very much a toddler in her behavior and skills, lol, but she is the unmedicated Stacey I'd prayed for all those years.

I'm attaching a bunch of screenshots of posts over the years in case you want glimpses of what her EEG'S showed and what it was like during the worst of it.
God is so kind.

She gets so excited when brother Robby shows up! He was late to church and she literally shoved me aside to hug him!🥰
10/06/2019

She gets so excited when brother Robby shows up! He was late to church and she literally shoved me aside to hug him!🥰

Address

Lancaster, CA

Telephone

+18184455976

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