Team Elliot- A Brain Divided

Elliot’s first day of First grade!!!!

How exciting!! He was a bit nervous but after talking about everything he’s been through this will be a piece of cake!! He is so brave and we are so happy for him to go make new friends and continue to thrive and learn new things!

He’s also down to just 1 medication now! And we will start to take that away in a month! We’re so thankful he doesn’t need to be on these medications anymore. They used to make him feel so foggy and tired.

He’s been almost 11 months seizure free!!!
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So many exciting things for little man!!

Happy first day Buddy!!! 💜🎉

We just got hooked up for our first EEG post 2nd brain surgery!

This will be one of our shorter visits. I use to want them to be as long as they could, gather as much data on his brain as we could. I can comfortably say that I’m okay with this only being 24 hours. 💜

We’ll be staying the night to make sure everything is okay, we haven’t seen any signs of seizures but this will just confirm that! 🙌🏻

We had one of our favorite techs here to hook him up and Elliot was so happy when he saw her, it melted my heart. We’ve made such amazing connections and friendships here with the nurses and staff. We’re so grateful for that because they make you feel at home when you’re not. 🙌🏻💜

Happy 8th Birthday Elliot!!!! 🎉🥳⁣
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😭😭😭😭⁣
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Where do I even begin!!⁣
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My birth story isn’t one I like to share. I never talk about the little details of that day. Hearing the whole day from my moms perspective or my mother in laws, it gives me chills. ⁣
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I developed thrombocytopenia and my platelets were dropping every week. We caught the bloodwork early on and tried to keep track of where my platelets were. If they dropped to below 50,000 they’d have to intervene. ⁣
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Every week I would get a nst on Tuesday, my finger poked on Wednesday, and an ultrasound on Friday. It was week 37 and my platelets were literally at 50,000, I went in for his ultrasound and they said he wasn’t practicing his breathing like he should. They sent me to labor and delivery for a nst, and then sent me home. Said everything was fine. (It wasn’t.) I’m now 38 weeks and I went in for the nst and Elliot was doing the same thing he was on Friday. They send me down to L&D for an ultrasound. Tried giving me something to go into labor and then the next thing I remember, all these doctors coming in saying we need to get him out. Alex made it 30 seconds after I was wheeled back. I remember being on that operating table and the last thing I heard was count backwards and I was out. ⁣
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This is Elliot’s birth story and it defines his strength and how he’s overcome so much. ⁣
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He was born with a 2.9 hemoglobin, he was losing so much blood. He was born a ghost baby, he was on the ventilator for 15 minutes. He then had to have 3 blood transfusions. We had to go to a hospital nearby with a better NICU and went for his first ambulance ride on his 6th day of life. ⁣
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Once we got to the new hospital, Elliot went down for a MRI, we were sitting in the NICU and a team of 8 or 10 doctors walk up to us and told us that Elliot suffered a perinatal stroke that damaged the whole left side of his brain. That feeling I still remember. 8 years later, I remember everything. The smells even, I remember. ⁣
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Elliot was able to come home 26 days later on an apnea machine. He kept failing his car seat test, so the team decided to send him home on an apnea machine. We had both of our cars there so I drove home with Elliot. The apnea machine kept going off, I didn’t even get around the corner and called Alex crying because it kept going off. But we made it home 🙌🏻⁣
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And then that goes into the beginning of what this BIG 8 year old has been through. Infantile Spasms, Cerebral Palsy, Focal seizures, epilepsy, 2 hemispherectomy surgeries, and now a boy living with half a brain. He is so amazing, so happy, he is so smart, he is the absolute sweetest. He has grown up so much, we are so proud of who he’s becoming. ⁣
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Through the years it’s been so hard, but his smile, his laugh, his love for music, his love for life makes everything seem not so bad. Hey we can do anything!! He proves that!!!! ⁣
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This day 8 years ago you came into this world and you’ve made such an impact Elliot!!!! Keep going baby!!! ⁣
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🥳🥳🥳🥳🥳🥳🥳🥳

Happy 2nd Hemiversary Elliot Marion!!!!

💜🎉🎉🎉🎉💜💜💜🎉🎉🎉

I seriously don’t even know how this was 2 years ago. Everything is such a blur!

Elliot is such a warrior and has been through the unthinkable, yet manages to make it look so easy!

He has grown so much since this surgery and we’re so proud of how smart he is! He’s such an inspiration and I look back on everything and all I can do is smile because he is just amazing!!!!!

Looking back on that day brings back good and bad memories but wow we are 2 years past that!!!!

Thank you all so so much for the prayers and following Elliot’s journey to seizure freedom!!

💜🙌🏻🙏🏻🎉

They are done with the surgery 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻

Hallelujah!!!!!!!!!!!!

They are doing the scan right now, then they will have to close him up. But the surgery is done, they got the missed connections!!!

In maybe an hour or so we will be able to see him!!!

He’s okay!!!!!! 🙌🏻🙏🏻😭💜🙏🏻😭💜🙌🏻

He was back getting prepped from 8:30 until the surgery started at 10:13.

We get hourly updates on how he’s doing.

Alex and I are just sitting in the waiting area in the main lobby. It’s pretty sunny so we’re by the big windows with the sun on our faces.

Our sweet boy is so strong. We’re almost there.
💜🙏🏻💜

Elliot is back in pre op. It’ll be another long excruciating day of waiting for him.

They said they’ll be done around 4pm ish. Hopefully earlier than that 🙏🏻

Say some prayers for Elliot, his team of doctors taking care of him, for us while we wait for him, and for his recovery 🙏🏻🙏🏻🙏🏻🙏🏻

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