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Helping Ezra

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Helping Ezra

Ezra is an overcomer and our Hero! Join us through Ezra’s journey with Gould Syndrome. The name “Ezra” means God-helps. In December 2019 Ezra had his 4th Surgery.

We thought it was appropriate to call this page “Helping Ezra” for that reason. We know that God is helping Ezra in a million ways that we can’t see. He is our little gift from God and we know He has a purpose for all that he endures. Ezra was diagnosed with Mild Cerebral Palsy and Epilepsy in February of 2012. With the goal of Ezra becoming seizure-free, a grid placement surgery was completed on

1/13/14 and a resection surgery of the right occipital lobe was completed on 1/17/14. A third surgery to remove the remaining section of the right occipital was completed in September 2015. In February 2015, Ezra was put on the autism spectrum, and started ABA therapy.

04/16/2025

Fb is rude!! 🤣 This page won’t let me share a video with the photos so I’ll pop the video underneath.

We signed Ezra up for Miracle League baseball and he had his first game last Saturday! He loved it!

I found a few pics from when he was little. He loved hitting that ball off the tee-and he was pretty good at it!

Anyone else have their kids in any adaptive sports in the Houston area? We’re excited to see what else might be available.

04/06/2025

Proud mom moment! Ezra has made so much progress with his reading this year! He picked out this Minecraft book at the school book fair—he already knows almost everything it teaches, but the reading level is just right. Easy enough to follow, but still stretches him with a few tougher words. Love seeing him grow in confidence!

02/28/2025

In 2019, we received genetic testing results that revealed Ezra and I have a very rare genetic disorder called Gould Syndrome.

It’s one of those things you hear about happening to other people—but never expect in your own life. Even though Ezra has epilepsy and we knew there were challenges, we never imagined a diagnosis like this was waiting for us.

While it was overwhelming at first, having answers has helped both of us understand ourselves in ways we never could before. It has given us clarity about things we’ve struggled with for years and connected us with others who truly understand. Awareness and research are so important, and we’re grateful for the work being done to support families like ours.

To learn more about Gould Syndrome or to donate, visit: https://www.gouldsyndromefoundation.org/donate

01/06/2025

Happy New Year! 🎊

I know it’s been a while since we’ve posted anything here. I have good intentions but often find myself not knowing what to share here since Ezra is doing so well most of the time. I say he’s doing well and that’s really in comparison to how he was doing so many years ago. If you’ve been around here since then, you know. If not, scroll back through the posts or photos.

So what’s new? I’ve had some new muscle pains in my back and left arm that started in August. The pain in my back was pretty consistent and debilitating at times. I began physical therapy in October and also began seeing a Chiropractor, both have helped tremendously! The PT originally thought I had tennis elbow but after over a month of physical therapy with only some improvement it was decided that whatever was causing my pain was most likely a result of Gould Syndrome. Over the last 7 years, I’ve had an increase in injuries and muscle pain specifically on my left side. Every person with this disorder has varying symptoms and extremes so I tell myself that I’m lucky to not have anything on the opposite side of the spectrum, but also pain is pain and it can be miserable!

Just before Christmas Ezra went in the hospital for a 23 hour video EEG to check for seizure activity. We haven’t visually seen any seizures since the one he has at the end of the school year last year but his OCD has been worse which tells me he probably needs an increase in his medications.

We haven’t had a follow up clinic visit yet regarding his labs and EEG results but I did get results from the online portal. His EEG showed 3-4 electrographic seizures per hour that were only seen in his sleep arising from the right posterior quadrant (typically right posterior temporal at times right centro-parieta. So my understanding is that these seizures are not the clinical seizures that we would normally see with our eyes but that his brain is aggravated.

We’ve been told by his doctors several times that Ezra has been doing great considering his seizure history, brain surgeries, and having Gould Syndrome. Having an occasional seizure and needing to change or increase medications is probably going to happen. It would be a HUGE answer to our prayers if God healed him and made his brain perfect but I know how bad things can get and for Ezra to have the life he has now is a miracle!!

I had a few days recently where I broke down crying over the life I thought I would have as a Mom and a wife and what may really happen. Ezra turned 14 on January 4th. He’s still too young to know what his adult life will really look like and with Gould Syndrome there’s even more unknowns, but right now we are leaning into the idea that he may never live completely independently. I don’t mean to sound ungrateful or gloomy because I’m so very proud of him, but this is still so hard! I know God will continue to put the right people in our path to help us and Ezra and that gives me a huge peace most of the time but right now I guess I’m just reflecting on and sharing the things I don’t share very often.

Anyway, this was way longer than I intended. I’ll update when we find out more. I hope you all had a beautiful Christmas holiday with whoever you call family. ❤️😘

09/23/2024

Ezra is so funny. I took him to his 6 month check up at the dentist this afternoon. We take him to Enchanted Forest Pediatric Dentistry in the Woodlands and he sees Dr. Rojas. She’s incredible with special needs kids and has so many great ideas and recommendations to make dental care easier!

They asked Ezra if he wanted to watch something on the tv and of course he asked for Star Wars. The tv was on the ceiling and had subtitles on and he asked for them to be turned off. The dental assistant picked up the remote and was like, “hmm let me see if I can figure this out”

Ezra was like, “give me that, I know how to do it.” I said, “I don’t know Ezra, that remote might be different than ours and you might mess up their settings”

She handed the tv remote to Ezra and he went thru the menus and totally fixed it in less than a minute.

I was shocked. He reads on about a beginner 2nd grade level but his word recognition for finding what he needs is on point! It reminded me of when the tech guy comes in to the office to fix a computer. I think Dr. Rojas and her assistant were pretty impressed too.

I’m so proud of him!!! His cleaning was easier than it’s ever been which tells me me he’s maturing and some of the tools that made him so nervous before are no big deal.

She did say that we need to buy him a soft toothbrush because his teeth are becoming shaped like an hour glass from brushing so hard. 😳

He’s got one stubborn baby tooth still hanging on so we have numbing cream to apply so he can wiggle that sucker out of there.

We’re so glad to be in a place to talk about a dental visit and not about the latest seizure. Hopefully it stays that way. 💜🫶🏻

07/09/2024

Dear Beryl,

How dare you come barreling through like you’re a Big Cat hurricane, acting all big and bad. You took Ezra’s internet, his tv, and he was especially disappointed that we made him go to bed earlier than normal last night. 😜

I do want to thank you though, for the time we spent talking, the reminder that things are just things, and for giving Ezra a day of games like Connect Four. He even got into the game closet and opened up a gift from 2 years ago 🫣, a fossil excavation kit. He worked steadily on that thing well after it was dark outside.

So yeah, thanks but don’t send any of your windy siblings in after you. We got the message loud and clear. ✌🏻😎

Mom

06/18/2024

Repost (updated) from Feb 2021 (FB made us take down post & pictures)

After failing multiple seizure medications and years of trips to the
ER every two weeks, Ezra underwent the first of 4 brain surgeries beginning in 2014.

Back then we were clueless to the cause of his seizures. Our insurance at that time wouldn’t cover the cost of genetic testing and we honestly didn’t believe that would lead to anything remarkable. (Man were we wrong!)

What we knew at that time was that
1. Ezra had stroke either as an infant or in utero.
2. He had increased muscle tone on the left side of his body (At one point he was given the diagnosis of mild cerebral palsy)
3. His seizures were focalized in the right occipital lobe.
4. His seizures were complex partials and didn’t stop on their own. Diazepam had to be administered rectally every time and an ambulance had to be called to due to the high dosage.
Fast forward to 2019 and Genetic testing was completed and we discovered that Ezra and I both share a very rare genetic mutation COL4a1 (now called Gould Syndrome)

What a journey the last 10 years have been! While there are still unknowns and challenges, we are grateful for Ezra’s year of seizure freedom and relieved to have answers to the some of the whys that we didn’t have before.

This video is from after his surgery in Sept 2014.

#

06/03/2024

The many faces of a boy excited for his first day of summer school.

Ezra wasn’t thrilled about attending ESY at first but when we walked him into the school and he met his teacher he started chatting away.

Mrs. Bear will be well educated in the “Dino Jedi” by pick up time today and hopefully Ez learned a little something too. 😉

03/20/2024

The day after Ezra had a seizure, Pat took him to the National United States Armed Forces Museum. 🇺🇸

He was feeling great (other than the typical protesting that he does initially upon throwing something new into his routine🤣) Literally zero signs that he had a seizure, minutes after or the day after. He’s been great and I’m amazed and so proud of his maturity through this.

We had a doctor appointment for him today and we’ve got an appointment next week with his Neurologist and then I’m sure he’ll have a hospital stay for some testing within the next month or so. We had to get referrals for 10 other doctors. His p*p looks surprised every time and even more surprised when I hand her the list with the Docors names, address, and phones numbers. I guess she either is shocked at the number of referrals we need or the fact that I have everything organized on the list for her.

So, we are waiting for answers and praying for just a tweak in medications and then we can breathe a deep sigh of relief. That’s the best case scenario and I won’t share the worst. God has Ezra and us, and He knows every cell, every abnormality, every good thing and every bad thing to come. He’s got us every minute and every hour, always. 🙏🏻

03/16/2024

We’ve been a little quiet on social media lately. I always struggle with how much to share, what is putting too much out there and what is good to tell others about so that if they choose, they can be praying.

If you’re a new friend, Ezra has had 4 brain surgeries for epilepsy and he and I found out that we both share a very rare genetic disorder (Gould Syndrome) which is a lack of collagen in tbe blood vessels. This affects the entire body but the problems vary from person to person.

Ezra’s last EEG over the summer showed new activity and this fall we increased his seizure medications. Full transparency-We’ve had so many other appointments and things going on that we really hadn’t followed up on his Neuro stuff after increasing his meds.

Today he had a seizure. 😭 He was in the shower and he couldn’t see so he called out for us. It lasted just a few minutes and for that I’m so incredibly grateful. It’s easy for me to not think much of it because his seizures were so bad when he was younger. You can’t see those types of seizures over and over and not be a changed human forever.

I want to say more, but I’m finding myself getting more overwhelmed talking about it, writing about it. We haven’t had to visit this in so long. My heart breaks for Ezra and yet he’s so chill about it. “My friend in school has seizures, and I think his are different than mine” He wasn’t scared after or feeling sick like he used to when he was little. There was no vomiting or sleeping for hours. No need to give 20 mg of Diazapam. (That’s what it took to stop his seizures when he had them regularly) No need to cal EMS to go to the med center. It was just a simple quick seizure. Totally manageable and we could have gone on with our plans to go to the military museum today but we didn’t.

I don’t know what this hero’s future looks like, but I know he is one tough dude. He’s a miracle and he’s so smart and amazing and I’m so thankful this seizure wasn’t worse. We can do this. 🙏🏻

“Sing like no one’s listening, love like you’ve never been hurt, dance like nobody’s watching, and live like it’s heaven on earth.”

- Mark Twain

02/17/2024

Not much has changed over the years…..

My Mom is still just as amazing and Ezra still loves listening to and telling stories….er…um ….legends. 😉

Fb pages won’t let me share more than one video in a post so I’m posting the other one below. Do yall remember when I shared the video that I put in the comments before?? How has it been so many years already?! 😭

02/16/2024

Yesterday Ezra graduated from Physical Therapy!💪🏻

We love his therapists at TIRR Memorial Hermann and Ezra enjoys going to OT and PT so much so we were kind of sad to be taking a break.

We’ll get him reevaluated in a few months and see how he’s doing but for now the extra time in the afternoons will be much appreciated!

I’m looking at swim lessons and fencing classes. The only fencing class I can find that has special needs classes is in Katy. It’s a 40 minute drive (which I’m willing to do) but if anyone knows of anything closer to Tomball, let me know.

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