Growing with Grant - Life with 18P Deletion Syndrome & Hydrocephalus

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Growing with Grant - Life with 18P Deletion Syndrome & Hydrocephalus 👦 Born 5/30/24 👦
🧠 Hydrocephalus Warrior 🧠
✨️ 18p Deletion Syndrome ✨️

21/07/2025

I just wanted to share this because I don’t want to be one of those people who only shows the highlight reel. I also don’t want to focus solely on the things Grant struggles with — but I know that one day, it’ll be so meaningful to look back and see how far he’s come.

Right now, he can sit unassisted for brief moments, and that’s a big deal. But most of the time, he doesn’t want to try. I’m not sure if it’s a tone issue or something else, but he often stiffens up and throws his body weight backward. Sometimes I can distract him just long enough to get those cute pictures and videos — but this is the part you don’t always see: the work, the frustration, the effort.

This is a glimpse into what working toward milestones looks like for Grant. Because of his hydrocephalus, 18p Deletion Syndrome, and brain differences, even something like learning to sit up takes incredible effort. What might seem small is actually huge progress for him. Every tear, every try, is part of his journey — and we’re so proud of how hard he works. 💙

So thankful for Grant's VP shunt because it quite literally saved his life, and we are extra thankful he hasn't had any ...
17/07/2025

So thankful for Grant's VP shunt because it quite literally saved his life, and we are extra thankful he hasn't had any malfunctions so far (knock on wood) 🙌

Some info on congenital hydrocephalus and acquired hydrocephalus! Grant has congenital hydrocephalus because his occurre...
16/07/2025

Some info on congenital hydrocephalus and acquired hydrocephalus!

Grant has congenital hydrocephalus because his occurred in utero, and his was caused by aqueductal stenosis. This was caused by the deletion on his 18th chromosome (also known as 18p Deletion Syndrome) because it caused his brain to form abnormally.

🩵💙🩵💙

Some facts about Hydrocephalus 💙🩵💙🩵
14/07/2025

Some facts about Hydrocephalus 💙🩵💙🩵

💙 Grant's Big Steps in His Stander 💙Grant's first day getting to try out his stander! Because of his diagnoses—Hydroceph...
07/07/2025

💙 Grant's Big Steps in His Stander 💙

Grant's first day getting to try out his stander! Because of his diagnoses—Hydrocephalus, 18p Deletion Syndrome, and other neurological differences—he isn’t able to stand or walk on his own yet. But the stander gives him the chance to experience the world in a whole new way!

🦵 It helps build strength in his legs and core
🦴 Supports bone development by putting weight on his bones, and will help with his hip health & alignment
💨 Aids digestion and circulation
🌍 And best of all—he gets to interact with the world from a standing position, which he absolutely loves!

These little moments in his stander are big milestones for him. We’re so proud of how far he’s come, and grateful for every bit of equipment that helps him grow stronger and more confident every day.

07/07/2025

Look at this big boy! Hoping the stander helps strengthen some of his muscles and helps with his hip alignment 😊 So proud of this guy every day!

Grant had a NICU clinic appointment today which is where they follow him from his stay in the NICU and he meets with sev...
27/05/2025

Grant had a NICU clinic appointment today which is where they follow him from his stay in the NICU and he meets with several different providers during these appointments. Today he saw a neurologist, dietitian, social worker, and occupational therapist.

The neurologist is going to reach out to his neurosurgeon and see what his thoughts are on getting an MRI of Grant's spine. His feet will randomly turn blue/purple when he is sitting up so they want to make sure he doesn't have a tethered spinal cord.

The occupational therapists did a couple of different assessments and he didn't score the greatest on them. He is doing amazing and has made so much progress but he is still delayed in most areas. We will just continue working with him and working with Early Intervention, and they also think feeding therapy will be beneficial for him in the near future.

The dietitian suggested keeping him on formula for another 3ish months and I can slowly transition him to whole milk whenever I feel comfortable. We will also just keep on working with him on eating and getting more comfortable with textures.

We were there in total for 3 hours and it makes for a long appointment, especially with big sister there with us lol. We will go back again in around 4 months and see how he is progressing 😊

Update from his neurosurgeon appointment this morning:We will be waiting until the fall to proceed with his surgery! I a...
23/05/2025

Update from his neurosurgeon appointment this morning:

We will be waiting until the fall to proceed with his surgery! I am very okay with waiting and this way we get to enjoy the whole summer. The plan is to do a split bone graft and a craniotomy, and he should only need to stay in the hospital for around 3 days. There is an increased risk of shunt infection with the surgery so we'll just be crossing all our fingers & toes that doesn't happen!

Once I have a set date for the CT scan and surgery I'll share with you all as well ❤️

I've been terrible about updating this page lol. Grant had another brain MRI this morning and that went well! They are r...
22/05/2025

I've been terrible about updating this page lol. Grant had another brain MRI this morning and that went well! They are rapid MRIs so they don't have to sedate him, but he absolutely does not enjoy them. Luckily the whole thing only takes like 10 minutes and they put me into the machine with him.

We also met with a plastic surgeon to start discussing the surgery to repair his skull and remove his encephalocele. They want to do a split bone graft to fix it, which means they will take part of the skull from another area and split the two layers in half. Then one part goes back to the spot they took it from and the other part goes over the area they are fixing.

They just need to make sure his skull is thick enough to do this, so the plastic surgeon will talk to Grant's neurosurgeon and go from there. He will need a CT scan at some point to see how thick his skull is.

We meet with his neurosurgeon in the morning so I will update again if we get any more information! ❤️

Hi everyone, haven't posted on here in a while but Grant is doing amazing! He will be 6 months old on the 30th but he ha...
21/11/2024

Hi everyone, haven't posted on here in a while but Grant is doing amazing! He will be 6 months old on the 30th but he had his 6 month well child visit today 🥹 I can't believe he's getting so big! He's slowly trending upwards with his weight gain and he's 99th percentile for height lol. Next week we will meet with OT to see if they think he will be ready to start trying solids!

There really hasn't been anything of concern going on lately. Just lots of follow up appointments for various things in the coming weeks. He will also have another brain MRI and see neurosurgery for a follow up next month.

In more exciting news, he rolled from back to belly for the first time a few days ago and now he's a rolling machine lol. I can't wait to see him keep growing stronger and start moving around ❤️

I made a little Christmas wishlist for some things if anyone felt like sending him something! Mostly just things that will help him in various ways and some stuff for starting to eat solids 😊

https://www.amazon.com/hz/wishlist/ls/3T1FGX9XWAK4?ref_=wl_share

Haven't updated on here in a while! Grant is doing great lately! Working hard on head and trunk control, and on learning...
12/10/2024

Haven't updated on here in a while! Grant is doing great lately! Working hard on head and trunk control, and on learning to roll over. He's 4 months old now which is crazy to me. He's just growing up so fast 🥹

He has about 14 appointments scheduled from now until December so he definitely keeps us busy. He sees GI for the first time next week to see if we can figure out his tummy issues, and he sees opthalmology at the end of the month for a follow up on his eyes.

I don't know if I ever updated on his EEGs but he is still seizure free! He does have some abnormal results but praying that they never turn into seizures 🙏

Other than that he's just the greatest little guy! He laughs and smiles and loves to be tickled. He also loves watching his big sister be her wild, silly self. I'm so proud of him everyday and can't wait to keep watching him grow ❤️

✨️✨️✨️✨️✨️

Grant's Amazon List:

https://www.amazon.com/hz/wishlist/ls/3T1FGX9XWAK4?ref_=wl_share

Gofundme:

https://gofund.me/c63b9ace

Cashapp: $taywon36

Mailing address:

PO Box 1181
Rochester, MN 55903

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This sweet boy is having an EEG done tomorrow to make sure he's not having any seizure activity and to establish a basel...
12/07/2024

This sweet boy is having an EEG done tomorrow to make sure he's not having any seizure activity and to establish a baseline! Fingers crossed that everything comes back normal 🤞

We will take all the thoughts, prayers, and good vibes as usual! 💙

✨️✨️✨️✨️✨️✨️✨️✨️

Grants Amazon Registry:

https://www.amazon.com/baby-reg/taylyn-smith-june-2024-rochester/2VNQW5KRJ534P

Gofundme:

https://gofund.me/c63b9ace

Cashapp: $taywon36

Mailing address:

PO Box 1181
Rochester, MN 55903

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