Raiv the Brave

Our journey with trichothiodystrophy

05/28/2026

Wow. What a difference 6 weeks with a feeding tube has made. 100% the right choice for our boy! 💪

05/09/2026

This cool dude went to see the dietitian yesterday! He is gaining weight, thriving, and overall doing great! I also ordered formula and other supplies from our new supplier this week without any issues. If you know anything about my previous battles with our old formula supplier, you’ll know that’s a big win!

We continue to offer him foods throughout the day, and we do one big family meal in the evenings. He has a visual timer for that meal, but last night chose to stay at the table a bit longer after his timer went off! He was very interested in steak and burgers this week. He put them in his mouth several times! I feel like we’re getting closer and closer to him taking a bite! 🥩🍔😋

05/04/2026

Everything that comes to be, must eventually come to pass.

Although not exactly a comforting sentiment when it comes to loved ones and pets, I take great solace in remembering that every difficult and painful moment cannot and will not last forever.

I wrote this on my ankle while Raiv was in the hospital to remind myself this would be a fleeting moment of our journey. It gradually faded over the time we were there, much like my fears and anxiety did. My mom always told me it was tacky to write on your skin, but maybe she’ll make an exception just this once 😉

04/29/2026

Can you believe Raiv has already had his feeding tube for 3 weeks?! 😱 We can’t either! He had a great 3 week checkup today, and everything is healing up nicely. He will have to go back under anesthesia June 5th to get his current “dangler” PEG tube replaced with a smaller low-profile button called a MIC-KEY button, but he shouldn’t have to stay overnight for that procedure. We’re so thankful that he’s doing so very well with all of this! It has all been much less dramatic than we had imagined it would be!

04/24/2026

Aaaah look who personally sent our brave boy a video today! We are starstruck over here!!! Absolutely made our day, thank you J. Dash! What a great guy! Raiv was so excited! We’ve been woppin’ all day! J. Dash called Raiv his junior wopper haha I love it! 🤩

04/23/2026

What a full circle moment 🥹 I remember teaching my friends how to W*p on the 3rd floor of Hanna’s bar back in the day. From W*ppin’ in the club, to W*ppin’ with my kid (Raiv was W*ppin’ less than 24 hours after his surgery!), and now having the support of the one and only ! You should check out his instagram and see what he’s been up to lately. He’s one awesome guy!

04/21/2026

“Eating often begets eating” is what our GI doctor said as he was explaining that Raiv might become more interested in actual food when he started using his feeding tube.

Well… last night Raiv did the best he’s EVER done with food! I made him a little plate of what we were eating, set a timer for him to just spend 5 minutes at the table with us without any pressure to eat anything. He touched every single food on his plate, played with textures, and tried putting several things in his mouth!

Even though he spit out everything and dropped most of it on the floor, that is MAJOR, MAJOR progress from where we were! This is a HUGE moment! I’m so excited for dinner this evening!!! 🤩

04/20/2026

Raiv had a great first day back at school and therapy today! His teacher sent us this picture this morning. 😍 Can you believe he’s already back at it?! I was fully prepared for him to be out for weeks or even the rest of the school year, but in true Raiv fashion, he far exceeded our expectations. His doctor actually said he could return last week, but I was too nervous lol. We are so proud of our brave Raiv!

04/18/2026

For the first time in a long, long time, Raiv is finally getting all the calories and nutrition he needs each day. ❤️🥹 And he can do it while playing outside with this handy dandy backpack! He has handled everything remarkably well. I’m so amazed by his resilience! He seems happier, the air in our home seems lighter. This has been life changing for our little family 😍

04/14/2026

We are home!!! We came home to this sweet little penguin gift from my bestie Amber Labrie! 😍 We already had our first home feed (with Grandma’s help!), did all his meds through the tube, and all went smoothly! He even had a little puree by mouth during his feed. I can tell his tummy feels good when he gets his tube feeds, so we’re working on associating that nice feeling with food by making sure to at least offer him some food by mouth during his feeds! I think this is going to be a game changer for our brave boy!

04/12/2026

We got to put some real clothes on and get some fresh air today in the courtyard! Looking forward to busting out of here tomorrow! 😍

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900 East 3rd
Chattanooga, TN
37403

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