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*****Update****I have now been on Kate Farms for almost 20 hours.. late last night I puked all over my bed.. mommy praye...
06/08/2026

*****Update****
I have now been on Kate Farms for almost 20 hours.. late last night I puked all over my bed.. mommy prayed that it was just a fluke thing. She cleaned up my mess and not even 30 mins later I projectile vomited again. When I throw up it takes my breathe away and then I panic trying to breathe. My vent starts beeping really loud alerting mommy that I’m not getting enough air 😢 it’s so scary for us both!
So mommy finally took me into the living room around midnight. Turned off all my feeds and let me sleep in my boucer, that way if I threw up again I would be sitting up and mommy could see me better.
Around 10 am this morning mommy started my feeds again( after me missing 10 hours of feed) hoping that my belly got enough rest to try again at a slower rate. A few hours later I threw up again and cried so much because my belly hurts. So mommy called for hours trying to reach my team of doctors to see what to do!
We used all of my infant formula so we have no more at all.. Then our supply company sent us a box of formula that I have never tried- and isn’t even a option for me. It’s something way out of our ball park.. so they suggested to let me continue the Kate Farms (formula that is making throw up) for today and HOPEFULLY our supply company will be able to emergency ship us some more formula to try.. 😭
It’s just one big mess!

After meeting with our nutritionist.. we have come to a not so fun choice. . Here it is!My formula was recalled- so I wa...
06/08/2026

After meeting with our nutritionist.. we have come to a not so fun choice. . Here it is!
My formula was recalled- so I was switched over to one formula (Ge**er) and my tummy was so upset. I wasn’t able to break down the ingredients so I then switched over to my current formula Nutramigen. I never had a problem with it, my tummy liked it and I was living life!
Well a typical baby would transition to whole milk at this age .. but since I only get fed through a small tubie in my intestines that’s not a option for me.
Another reason being, as kids grow they need more calories and nutrients to continue to grow. Typically kiddos will be eating table food and what not, so since I don’t do that I have to change to a more “permanent” solution.. being a pediatric formula.
Soooo my team switched me to Kate Farms. A pediatric formula based off of a whole food diet.. and well one of two things happen, my stomach A) didn’t tolerate it .. or 😎 I got a random stomach bug two days after I started the new formula.
Whatever it was my stomach was very upset, causing me to throw up, have extreme diarrhea and eventually causing a bowel obstruction.. I never fully went back to 100% after that! So my team took away the Kate Farms and put me back on my infant formula (Nutramigen).
A few weeks have passed.. we raised my calorie intake of the formula and I have continued to stay stagnant in my weight. I have lost weight every time and now I’m sitting right at 14lbs.
However yesterday we re-visited the conversation about switching to a pediatric formula again… and they gave mommy two different options, both which sucked, her words not mine 🤣
Option 1) trying a new formula called Peptamen JR but knowing that it’s now on back order and the likelihood of getting it every month is LOW. And if I don’t get that every month they would substitute a different kind of formula that’s similar, but it could possibly be different every month. Which sounds like a disaster! And my tummy would not like that.
Option 2) Try the Kate Farms again and hope that I just had a tummy bug last time and that I can tolerate a full feed of this formula 🤞🏽
Both sound terrible but mommy chose to try option 2! Tonight we will be starting the Kate Farms and we are praying with all of our might that my belly accepts the formula and I can start to gain weight!
This formula shortage is real, and the chaos it’s causing is insane!

No Hip Dysplasia!! 🙌🏽No Tethered Spine!! 🙌🏽I can’t explain how happy I was when I seen a clear X-Ray of how AMAZING his ...
06/08/2026

No Hip Dysplasia!! 🙌🏽
No Tethered Spine!! 🙌🏽
I can’t explain how happy I was when I seen a clear X-Ray of how AMAZING his little legs looked! 😭
After a long conversation with his Orthopedic Surgeon this is where we are at, there is NO bone malformations! There is no fusions in his legs or ankles. There is some in his feet but they aren’t worriesome!
Hips- As I had mentioned before, Raedyn’s pelvis isn’t super strong yet, so he is tucking his hips inwards to keep himself balanced. His hips DO return to their original spot when he is helped! So that’s very reassuring! As he gets stronger he will learn to relax his hips and sit in a more safe position with better balance! 💜
Legs- As for the bowing, the surgeon explained it to me like this.. As infants they lay “frog legged” with their legs open, and then once they grow and begin weight bearing their legs will be straight underneath them. The more they stand and walk the stronger their legs get and they will appear straight! He still rests with his legs open and he weight bears absolutely nothing through his feet, so therefore there is not muscle growing in those legs to straighten out. He really does believe once he starts to stand more that his legs will correct themselves on their own! And if he were to need a little bit of help later with braces that would be an option!
Ankles- So Raedyn’s ankles have super hyper flexion. His whole body does actually. He is very flexible and bendy! It’s because he is considered to be low muscle tone. So with that being said.. he is not cleared to stand on his feet without braces. He was fit yesterday for the smallest feet braces I have EVER seen! 🤣 Anyhow, once his braces get here we will be able to work on him standing and weight bearing through his feet! We are definitely far from him pulling or standing on his own, but this is the first step! And we can’t be more excited! Our hope is to build those muscles up in his feet and legs so one day he will not have to wear feet braces!
Toes- as for Raedyn’s little piggies.. he has 2 webbed toes on each foot and we do not plan on releasing them. They aren’t causing an issues so we will keep is toes as is! However, his big toe.. may or may not need intervention. For the moment we can get shoes on him but as he grows we will see how big of a problem it is. And if it causes any balance issues. In worst case scenario they would need to release the fusions in his toe and straighten it out with a splint. But we are years away from that hopefully!
Overall, it was a very successful appointment yesterday and I couldn’t be more relieved! 💜
It’s been a long few weeks of big appointments and last night I felt like I was hit by a train. I was emotionally tapped out. I cried happy tears, and let it all out because I had been holding on to fear for a few weeks! So now that it’s all over I’m excited to move forward! I’m excited to see where this takes my little boy! I cannot wait to see how big and strong he can get! 🙌🏽

Hello everyone!Yesterday was a long day, but we walked out with our heads held high!I started off with some pictures of ...
06/08/2026

Hello everyone!
Yesterday was a long day, but we walked out with our heads held high!
I started off with some pictures of my noggin! Then my Nuero surgeon and my Plastic Surgeon came in and seen me.. both mommy and I were so nervous, you could probably hear our heart beats filling the room!
Both of my favorite girls touched my noggin and felt all around. They said there has been a small improvement but not as much as they had hoped for. Which isn’t super surprising! They are hopeful that if we give him a few more months he will be right where he needs to be! So we are planned to see them in July for one more MRI before my big day!
They keep telling mommy that I need to grow and get big and strong! I’m trying but no matter what I’m doing, I’m not gaining any weight. As of yesterday I was 14.6lbs. Which isn’t a terrible weight but they would like me to be a little bigger for surgery! So I’m following up with my Nutritionist next week to find a new nutrition plan! I’m currently still on my infant formula because I’ve been tolerating it so well! But we need to find a big boy formula with more calories, that my tummy will handle! So that’s our next fight!
I’m excited to just chill out and spend my time with my family! It’s going to be so nice to not have to worry about surgery during this time! So THANK YOU for your love, support and prayers yesterday! We felt them! And I truly do know the man upstairs has his hand in our journey 💜
🤟🏽

The next few days are big days for me and my family.. today I have to go in and see my NueroSurg, she is the doc that ta...
06/08/2026

The next few days are big days for me and my family.. today I have to go in and see my NueroSurg, she is the doc that takes care of my noggin. She knows how smart I am because she has worked on and seen my brain from the inside 😉
I love her to death but it’s always something when we go into that office. If you don’t remember back in March I had my Cranial Distractors taken out and I was supposed to get my FOA (Frontal Orbital Advancement). However once my team got in there they realized that my skin was extremely thin and brittle. For the FOA process they would have to reshape and move my forehead forward, creating more of a eye brow bone to protect my eyes. With that being said my skin would have to stretch, a lot. They would essentially need to stretch the top of my skin downward to cover my new forehead. So as you could imagine if my skin was to thin and brittle how could they move forward with the FOA? Well that’s what my NueroSurg said. So they closed me back up and decided to give me time to heal and grow. My scar had a hard time staying together this time, it’s again so thin that any sort of manipulation causes the skin to fall apart. So that’s what this appointment will determine. We of course do not want to have another surgery, but my eyes need protection, the sooner the better. But also, we do not want to rush this surgery if my skin isn’t ready because we can run into MANY problems. Infections and skin grafts are very high with my case already- but then add a Shunt into the mix and it can get very dangerous. So we are praying for the very best outcome today regarding my next surgery!
We love and appreciate our social media family near and far! I love when mommy tells me what everyone says and how much they love me. It makes me feel so warm and cozy inside 💜
I’m asking you all to pray for my family today as we go into this appointment and receive whatever news they decide to give us. Mommy is taking it really hard, because she feels either way there isn’t a win in this situation. So if you have any extra hugs to give.. send them virtually our way!
Remember everyone, this life is hard somedays but we must push forward and continue to 🤟🏽

Stay clever little fox 🦊
06/08/2026

Stay clever little fox 🦊

06/08/2026

By far, my favorite moment 💜

06/08/2026

Ya know, im not even mad! Look at that pencil grip 😂

06/08/2026

We started Raedyn on a feeding schedule that fed him 24hours continuously.. then last June we got him down to 20 hours! Today we just got him down to 12!!! 🎉 less time attached to his feeding tube=More intake by mouth! 💜

06/08/2026

There were days I never thought we would get here, but look at him now 💜

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