Believin’ for Ethyn

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Believin’ for Ethyn Ethyn was born with a condition called Spina Bifida.

We hope to share his story to inspire others, and also bring awareness to his condition to help others going through similar things.

Hope your weekend is groovin’! Little Ethyn is finally eating and can’t get enough- praise the Lord. Still having weight...
30/08/2025

Hope your weekend is groovin’!

Little Ethyn is finally eating and can’t get enough- praise the Lord. Still having weight gain concerns, but we are so glad to see him eating for the time being.

PT is working him and we are helping him to learn how to push himself up onto something, even if we are manually doing a lot of it for him, but he giggles anytime he is in a standing position. Today he learned he can get on his hands and knees and dance to music, and he kept doing it over and over, causing all of us to break out in laughter, which made him all the more happier.

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Today I unpacked the last bag from our life in Seattle. I know. 18 months later and still had things from the hospital and life over there. I knew the bag had been in my car since his birth and since coming home. I knew I needed to go through it. But mentally I couldn’t.

I lived out of that bag for months. I learned quickly from constant ER visits and maternity visits what to keep in that bag, just in case I wasn’t going to go back home before having him. I kept my favorite chapstick in there, because hospitals are cold and dry and my lips were continually dry while there. I kept a few lipsticks in there to make myself look at least a little alive and not like death. Hand sanitizer because hospitals. A straw. A fork. My Apple Watch. Charger blocks and cords. An inhaler. My pain meds. Lactose pills. And eventually deodorant and lotions for the longer hospital stays when I couldn’t go home to get essentials.

My hospital bracelet and Ethyn’s baby bracelet when he was born. Normally the bracelet would have shown I was his momma and I would show it to a nurse and they would match it to him, but we never got to do that. He was whisked away immediately after he was born to the next hospital. But I kept the bracelets in my bag.

So today I emptied the bag. Threw away the things I didn’t need anymore. Got rid of the baggage. And filled it with the things I can use now in case of an emergency while out with the kids. It’s still a part of my life, but now I don’t have to live out of it. Finally the last thing from his birth.

18/08/2025

Can you tell we love Miss Rachel over here? Ethyn was sick the middle of last week, and we watched all four episodes on Netflix probably four times each during the hardest days, and needless to say, he’s memorized them. Haha.

Lots of smiles and laughter this week! This little guy is quite the charmer, and knows it. lol. We are just loving life ...
10/08/2025

Lots of smiles and laughter this week! This little guy is quite the charmer, and knows it. lol. We are just loving life and living in the moment. Hope you all catch the smiles after seeing these pictures. He’s contagious! lol.

New gloves for the little guy! One thing that’s been difficult with his wheelchair is how dirty his hands get, especiall...
06/08/2025

New gloves for the little guy! One thing that’s been difficult with his wheelchair is how dirty his hands get, especially when out and about. Like black dirty. I doused him in sanitizer every single time we got back in the car, but he’s developed a type of dermatitis around his mouth from all the bacteria and whatever else is on the ground. So I researched ALL the kids gloves I could find, and finally found a set on Amazon, and they fit PERFECT. He immediately took off after putting them on tonight as if he didn’t realize he had them on. A win for sure!

PS- take a peek at that adorable man bun! 😍😍😍

Happy start of the week to everyone! Hope everyone is as happy as Ethyn- no appointments this week! Yay! Except for toda...
29/07/2025

Happy start of the week to everyone! Hope everyone is as happy as Ethyn- no appointments this week! Yay! Except for today- his weekly chiropractor appointment. Gotta keep up with that to prevent scoliosis.

Sometimes, I miss being invisible. I miss being able to go to public places and not be approached by a lot of other peop...
22/07/2025

Sometimes, I miss being invisible.

I miss being able to go to public places and not be approached by a lot of other people or children who ask about our little guy. I miss being able to sneak into church and sneak back out without being noticed. I miss taking my kids to the park and blending into the crowds without having to talk to anyone.

But only sometimes.

Today, we went to our local park with handicap accessibility features, and Ethyn had a blast. We were there for a couple of hours, and he loved to explore all parts of the park and wheel around.

And we were approached by many small kids and by several adults as well.

The kids would ask what happened to his feet. Or what his chair was. Or ask why he couldn’t walk.

I would explain in child like terms that he was born with an owie that made it so his feet didn’t work, and most would nod and go on their way. And yet others would continue to ask about his owie, and about his chair, and about his braces. And I would do my best to help them understand.

Parents would comment about his adorable chair, and you could see the questions in their eyes and faces, but not daring to ask them aloud for fear of saying the wrong thing. A few were kind enough to ask, and we would talk about his spina bifida and why he used his wheelchair.

We did meet a mom and her son there today, and her 4 year old boy was born with a deformed leg and they ended up having to amputate his leg and he now wears a prosthesis. That was amazing to talk to this mom about resilience and strength in these kiddos as we watched both our boys zip around the park.

And yet another mom had a spina bifida scare with her 3 year old daughter after some failed reflex tests, and she was able to relate to some of the fears she had for her daughters future during that time.

And another family came up to us, exclaiming about a child they knew who was born with spina bifida and was fascinated with our little wheelchair, wanting to share the info with their friend.

So only sometimes do I miss being invisible. And at the same time, I love telling others our story and finding new friends along the way.

Learning time! Ethyn was born with bilateral clubbed feet, a common condition among babies born with spina bifida. This ...
21/07/2025

Learning time!

Ethyn was born with bilateral clubbed feet, a common condition among babies born with spina bifida. This means that his feet and leg bones didn’t form correctly in utero, and they curled up. When Ethyn was born, his right leg liked to lay across his hip, and the other leg is slightly deformed and rigid.

For spina bifida kids, one of the reasons clubbed feet will happen is because of damaged nerves and overactive muscle groups. Ethyn’s lesion is at L2, but his function is around L3-L4, which means he can feel the inside of his legs, but can’t really feel the outside, backside, or lower legs. Since he has muscles that have working nerves on the inside of his legs, they became overactive and started pulling his feet inwards and upwards, causing clubbed feet.

Because he was born with clubbed feet, the best chance he would ever have at walking would be to try to correct his feet, and the best way to correct clubbed feet is serial casting. Little guy was in plaster casts for around 3ish months, and switching out his casts every week. Each week they would adjust his feet and put on new casts to try to correct the malleable baby bones before they became too hard to adjust.

Now Ethyn wears braces, or the correct term is Ankle-Foot Orthosis, or what we call AFO’s. He is to wear them for 23 hours a day, and we take off his braces during electrical stimulation therapy and at night before bed. These AFO’s are supposed to help his feet from trying to return to their curled position. Because he still has those overactive muscles in his inner thighs, the muscles will continue to try to pull his feet up and in. So the braces help make sure the feet stay put.

Keeping his feet is very important because straight feet mean a chance at walking someday. So we wear AFO’s religiously.

If any of you have any questions about Ethyn and spina bifida, please let us know- we are more than happy to educate and help you all learn more about our world.

Goofy smiles are my favoritist. This boy lights up a room anywhere he goes. 🩵🩵🩵 hope you all have an amazing weekend!
12/07/2025

Goofy smiles are my favoritist. This boy lights up a room anywhere he goes. 🩵🩵🩵 hope you all have an amazing weekend!

My lil’ firecracker had a good Fourth of July! We loved the cooler weather, the kiddie parade, the car show, the communi...
05/07/2025

My lil’ firecracker had a good Fourth of July! We loved the cooler weather, the kiddie parade, the car show, the community band, and then we ended the day with the local fireworks show and then a few little fireworks at the grandparents place. A very full but happy day. Hope you all had a good and safe fourth as well!

27/06/2025

We have a new game where we slow blink at each other continuously, it’s so stinking cute. Plus his scrunchie smiles melt any heart. ❤️ please pray for us as we battle some insurance issues. Our son was on a bladder medication, and it was not good for him at all, and even now, a month later after going off of it, I’m still realizing all the side effects he had from it. We wanted to try another medication that’s much safer for him, and we did get to try it for a month due to a miscommunication in the medical system, but insurance is denying coverage for this med. Our medical team has tried to appeal it once already, and it was denied, and they are trying to appeal it again. This medication has been amazing for Ethyn, and I don’t want to go back to the other medication because it was so hard on him. Plus, one of the only other alternatives is a very invasive Botox procedure, where he would have to go under general anesthesia every single time, and I’m not ok with that route either. Please pray that insurance will see our case, that they will approve it, and allow our son to continue with it. Otherwise it’s like $300 or more a month. We really just want the healthiest and best for our little guy, and we hope insurance will see that.

Busy week for buddy, and another upcoming busy week, but these scrunchie smiles just melt away the stress from all the g...
21/06/2025

Busy week for buddy, and another upcoming busy week, but these scrunchie smiles just melt away the stress from all the going going going.

We had speech therapy and a pediatrician appointment in Wednesday, and a chiropractor appointment on Friday. We’ve been doing spinal stim therapy 3 times a day, and I feel like I see some minor improvements.

Next week we have a nutrition appointment, physical therapy, an AFO appointment for his braces, and another chiropractor appointment.

His pediatrician seemed to think Ethyn is doing amazing though, which is good to hear!

Hope you all have a good weekend, and also hope you get a smile from seeing this adorable face.

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