Hope for Silas

02/05/2026

💜💜💜

💜 Feeding Tube Awareness Week | February 1–7, 2026 💜

Feeding Tube Awareness Week is a time to educate, raise awareness, and break the stigma surrounding feeding tubes—because for thousands of children and adults, feeding tubes are not a “last resort”… they are a lifeline.

🍎 What is a feeding tube?
A feeding tube is a medical device used to provide nutrition, hydration, and medication to someone who cannot safely eat or drink enough by mouth. Tubes can be temporary or long-term and may include:

- NG tubes (nasogastric)
- OG tubes (Orogastric)
- G-tubes (gastrostomy)
- GJ/J tubes (gastrojejunostomy/jejunostomy)

They support people with medical complexities such as prematurity, neurological conditions, cancer, GI disorders, feeding disorders, and many other diagnoses.

🧠 Here’s something many people don’t know

Only about 20% of tube-fed individuals are unable to eat by mouth at all.

That means 80% can still eat some foods orally—but not enough to meet their nutritional needs safely. Feeding tubes don’t replace eating when it’s possible; they supplement, support, and protect.

✨ What feeding tubes really represent:
✔️ Growth
✔️ Strength
✔️ Healing
✔️ Energy to play, learn, and thrive
✔️ Less stress around mealtimes
✔️ More freedom, not less

🚫 What they do NOT represent:
❌ Giving up
❌ Failure
❌ Laziness
❌ “The easy way out”

Feeding tubes are a medical solution—no different than glasses for vision, insulin for diabetes, or wheelchairs for mobility.

💬 Let’s talk about the emotional side:
For many families, tube feeding comes with grief, fear, guilt, and judgment from others. Feeding is deeply emotional, and choosing a tube is often one of the hardest—but most loving—decisions a caregiver can make.

🫶 This week is about visibility and compassion.
It’s about normalizing medical devices, amplifying lived experiences, and reminding families they are not alone.

📣 Join the conversation below! ⬇️

💜 Did you know Feeding Tube Awareness Week existed before today?

💜 What surprised you most about tube feeding?

💜 Are you a tube-fed individual, caregiver, NICU parent, or medical professional?

💜 If you could tell the world ONE thing about feeding tubes, what would it be?

If you see a tube, see strength.
If you see a pump, see life.
If you see a family navigating tube feeds, see love in action.

💜
💜
💜
💜
💜
💜

09/27/2025

We’re back at our old stomping grounds…Levine Children's Hospital.

Silas had a scheduled surgery yesterday to remove his tonsils and adenoids. The hope is that, because his tonsils were so large, it may help with his respiratory issues. Since it’s Silas (and things are never simple), they wanted to keep him overnight and make sure he was good after the surgery. They had also found granuloma tissue when they were in his airway so they cut out the tissue. They were also able to get a biopsy and perform an echocardiogram to check his heart. At rounds this morning, the team said everything looked good (although we don’t have the biopsy results yet).
Silas was an absolute champ the entire time though!💪
We should be getting released here shortly. We like a nice, short stay!

It was nice seeing all of our old nurses and medical team members! And Bonus-we got the cool room on the 11th floor that has the ceiling lights (it’s the little things sometimes:)

09/06/2025

Yesterday was Silas’s 3 Year Liverversary! 🎉
3 years since he received a life saving transplant made possible by the selfless donation of a living donor who gave Silas the ultimate gift.

I see our beautiful, happy, playful little guy today and it’s hard to imagine how bad things really were just a few years ago.

I remember the sleepless nights in the hospital (or should I say months), the fear, the quiet nights in the hospital just praying, begging, pleading.
Birthday parties in the hospital (because milestones should still be celebrated-even if it’s not quite the same). The machines keeping our sweet boy alive, the joy I felt whenever I got to hold him (which was not always possible), and the terror I felt every time they took him back for a surgery. I remember being turned down by hospital after hospital, hearing the words “There’s nothing else we can do”, being offered the choice to discontinue care, watching him fight sepsis, organ failure, complication after complication and losing all hope. The fight was hard and messy and I was exhausted.

So when I say that we are grateful, I mean we are grateful for the help…any help…all help. We are grateful to God, the medical staff that went above and beyond (I’ve seen nurses cry as they were having difficulty trying to get a central line in my son so they could help him after he coded). We are grateful for everyone that helped us during that time. We are grateful for the amazing human that donated a portion of her liver so that my son could live. So that we could celebrate more birthdays and milestones and memories.
And while Silas still has surgeries, treatment, therapy, home nursing and challenges to overcome, I have no doubt he will keep fighting and continue to grow and thrive.

So Happy Liverversary little man! You’ve come so far and we’re all here cheering you on!

08/09/2025

You get one vote per day! Lets move Silas to #1 💙

My Son Should Be Toddler Of The Year Because He Inspires Those Around Him Every Day With His Positive Attitude And Energy!

07/21/2025

BREAKING NEWS: The most unstoppable toddler on the planet is up for Hasbro’s Toddler of the Year!

Y’all… my son isn’t just a toddler, he’s a tiny warrior with a medical chart thicker than a Harry Potter book, a laugh that could cure sadness, and the sass of a teenager.

✅ He’s had more hospital visits than most adults have had oil changes.
✅ He’s fought battles before he could even walk.
✅ And he still manages to run the household like a tiny CEO with a juice pouch.

Now he’s taking on his biggest challenge yet: Hasbro’s Toddler of the Year.
Let’s show the world that feeding tubes, medical gear, and superhero strength deserve the spotlight too! 🦸‍♂️💥

🗳️ Vote below by clicking this link:

https://toddleroftheyear.org/2025/silas-d802

🎉 Because this kid’s already a legend, now he just needs a title to match!

My Son Should Be Toddler Of The Year Because He Inspires Those Around Him Every Day With His Positive Attitude And Energy!

02/28/2025

Show Your Stripes!

Today is Rare Disease Day.

30 million Americans are living with a rare disease.

The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra! It might not be obvious when you see them, which is why they show their stripes to raise awareness.

Our little zebra is 3 years old and is living with multiple rare diseases. He is beating the odds every day. We are the lucky ones. We are lucky to have answers and treatment. Many Americans, including children, are living with undiagnosed rare diseases. We raise awareness and show our stripes for them.

07/19/2024

I just wanted to update everyone on Silas.

We’re back at our 2nd home today, Levine Children's Hospital, but only temporarily! Silas had a procedure today under sedation. His Pulmonologist and ENT doctor want to make sure there are no issues with his airway structurally to decide what the next step is on our journey to decannulation (getting his tracheostomy removed for good!).
The procedure went well. They saw no structural issues or malacia. They did remove some hypergranuloma tissue that may have been causing some issues.
Our next step is to meet back with his medical team to see how to proceed. Hopefully we’ll have a trach-free baby by the end of this year!

Silas is now recovering in the PACU and we’re waiting for him to wake up. Once he is alert and vitals look good we can go home! This is probably the shortest hospital stay we’ve ever had! 🎉

01/01/2024

So long 2023! 👋

2023 was a year of transitions and firsts for Silas and our family.
On New Year’s Day 2023, Silas had only been home from UPMC Children's Hospital of Pittsburgh for about a week. We were eager to get back some sense of normalcy. That didn’t last long, as we embarked on another 6 week (on and off, mostly on) hospital stay at Levine Children's in March and April dealing with infections and a broken leg.🤦🏻‍♀️
May and June allowed us some normalcy as we settled into a new routine at home with lots of doctor appointments, therapy visits, medication adjustments, the search for new home nurses, and all the things our medically complex superhero comes with.
In July, Silas was well enough to take his first airplane ride to Illinois to visit family that had waited so long to meet him.
In August, Silas celebrated his 2nd Birthday surrounded by friends, family and lots of love. ♥️
September was Silas’s One-Year Liver Transplant Anniversary!💚🎉
In October, Silas had his first trick-or-treating experience and went back to Pittsburgh for his one-year transplant evaluation and got a great report!
In November, Silas celebrated his first Thanksgiving at home with family.
December was a rollercoaster! Silas got Covid and it hit him pretty hard for 2 weeks, but he made it through without having to be hospitalized. Christmas was amazing as Silas was feeling much better and we got to visit with family again.

What an adventure it’s been! We look forward to everything 2024 brings!

10/31/2023

We’re so excited to celebrate Silas’s first Halloween out of the hospital (Photos to come!) After 2 years in a row (and almost a 3rd), we are so much more grateful for our family time.

Our heart still goes out to the families that have to spend holidays in the hospital.♥️

Levine Children's and UPMC Children's Hospital of Pittsburgh both did an amazing job of making it feel better though♥️

10/28/2023

Our trip to UPMC Children's Hospital of Pittsburgh was successful, but we had a massive change of plans!
The Transplant Team contacted us last minute and decided to hold off on Silas’s surgery. (Silas was supposed to have surgery this week to close his abdominal wall as they had left it open after transplant to allow for swelling and only closed the skin).
The Transplant Team wants to wait until next year, after he gets his trach out and has grown a little more. His cardiac echo still shows mild dialation in his aortic root, so they want to keep an eye on that as well.
We still traveled to Pittsburgh for his one year post-transplant follow-up appointments. He had seven back-to-back appointments in one day to see all the specialists. He had lots of labs, ultrasounds, etc. It was an exhausting day but he handled it like a champ.

While we were looking forward to getting this surgery over with, it will be nice to be home for our first Halloween with Silas🎃.