11/26
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BEElieve In Benny
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BEElieve In Benny
11/26/25
Benny Boy Update
These past few weeks have been my busy season, and everything feels like one big blur. But in the middle of the swirl, Benny has been working so hard.
We’re practicing eating 30ml by mouth each day. Some days it’s easy, some days it’s tough. G-tube moms will understand — I’ve never really seen him act hungry because his feeds are scheduled and take up most of the day. Trying to learn oral feeding on a full tummy is its own challenge.
So we’re experimenting with timing and giving him little windows off the pump, hoping he’ll feel just enough hunger to be more interested in food. We don’t want to remove any feeds since weight gain has been a struggle… but this week he was up in weight 🙌🏼 and his vomiting has improved. Not jinxing a thing. Just grateful.
Since coming off one of the seizure meds a few months ago, there’s so much more light in his eyes. It’s tiny but undeniable. And as always — once I see an inch, I dream of a mile. I can’t help it.
A lot was taken from our family… but compared to one year ago, I feel lighter. Happier. I don’t tell people “we’re doing okay” anymore — I say we’re doing good. Still, this time of year can hurt. You’re out more, seeing more people. When someone tells me their little one is 18 months old and running around, it hits hard. Benny should be doing that. And that ache is real.
We’re preparing for a family trip to Branson soon. My brain goes straight to packing lists, medical supplies, pump plans, seating, safety… 9,000 precautionary steps to make sure Benny’s needs are met. I wish I could just be planning ride partners and snack bags, but this is our version of love.
Stem cell update:
My first call is Monday! I’m excited — hopeful. Praying for an earlier opening than the two-year wait they gave us. They said cancellations pop up, and if one does, you have 48 hours to get to Arizona. 🤣
We will make it happen. One way or another. If you have done stem cell with your child’s cells please reach out to me!
Through it all, I’m so thankful for the Lord — His protection, His timing, His covering over every detail of our life.
Thank you for loving us, praying for us, and walking this road with our family. 💛🫶🏼
Benny Boy Update
These past few weeks have been my busy season, and everything feels like one big blur. But in the middle of the swirl, Benny has been working so hard.
We’re practicing eating 30ml by mouth each day. Some days it’s easy, some days it’s tough. G-tube moms will understand — I’ve never really seen him act hungry because his feeds are scheduled and take up most of the day. Trying to learn oral feeding on a full tummy is its own challenge.
So we’re experimenting with timing and giving him little windows off the pump, hoping he’ll feel just enough hunger to be more interested in food. We don’t want to remove any feeds since weight gain has been a struggle… but this week he was up in weight 🙌🏼 and his vomiting has improved. Not jinxing a thing. Just grateful.
Since coming off one of the seizure meds a few months ago, there’s so much more light in his eyes. It’s tiny but undeniable. And as always — once I see an inch, I dream of a mile. I can’t help it.
A lot was taken from our family… but compared to one year ago, I feel lighter. Happier. I don’t tell people “we’re doing okay” anymore — I say we’re doing good. Still, this time of year can hurt. You’re out more, seeing more people. When someone tells me their little one is 18 months old and running around, it hits hard. Benny should be doing that. And that ache is real.
We’re preparing for a family trip to Branson soon. My brain goes straight to packing lists, medical supplies, pump plans, seating, safety… 9,000 precautionary steps to make sure Benny’s needs are met. I wish I could just be planning ride partners and snack bags, but this is our version of love.
Stem cell update:
My first call is Monday! I’m excited — hopeful. Praying for an earlier opening than the two-year wait they gave us. They said cancellations pop up, and if one does, you have 48 hours to get to Arizona. 🤣
We will make it happen. One way or another. If you have done stem cell with your child’s cells please reach out to me!
Through it all, I’m so thankful for the Lord — His protection, His timing, His covering over every detail of our life.
Thank you for loving us, praying for us, and walking this road with our family. 💛🫶🏼
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