Cal’s fight against vasculitis & heart failure

Cal’s fight against vasculitis & heart failure Hi, please read my pinned post

Last night was rough.Calvin was up pretty much all night tossing and turning. Very restless. Uncomfortable. We are not e...
09/04/2026

Last night was rough.

Calvin was up pretty much all night tossing and turning. Very restless. Uncomfortable.

We are not exactly sure why because he is hit or miss on telling us where it hurts or IF something hurts. He was kind of pointing to his feet when I asked him. The only thing I could think of was I had taken him and his sister to the park after school and he ran around a bunch more than he typically does when we are home. Just hoping it’s growing pains. He’s battling a bit of a cold right now too so there are lots of factors….

He did finally smooth out and fell asleep after my husband put on crickets and owl sounds for white noise.

Hoping tonight is better for everyone’s sake. He’s been napping on and off today so he’s making up for last night that’s for sure!

Here’s a rare photo of all 3 of my babies in one pic 🫶🏽

Yall.Calvin has officially, pretty much, grown out of the pajamas he’s been wearing since he was 6 months old! Apparentl...
09/03/2026

Yall.

Calvin has officially, pretty much, grown out of the pajamas he’s been wearing since he was 6 months old!

Apparently when you’ve been on prednisolone pretty much your entire life and your heart is failing- your body doesn’t focus much on growth because it’s just trying its best to keep you alive.

I used to tear up packing away clothes that his sisters out grew. Now I view it totally differently. He’s healthy, enough, TO grow out of them. Wow..perspective really changes after you become a medical parent. Counting ALL our blessings. Even bigger jammy sizes.

Note: I’m the last person on earth to rush Christmas but these were just the first pair I grabbed after bath last night out of the ‘bigger sizes tote box.’

Guess I gotta go through some BABY clothes today 🥹

This was our family one year ago to the day.On a family hike.We tried to make life as normal as we could for a toddler (...
09/01/2026

This was our family one year ago to the day.

On a family hike.

We tried to make life as normal as we could for a toddler (19 months) that couldn’t walk and couldn’t get any sort of cut or scrape to his skin.

He was so happy that day. Little did we know he was fighting for his life.

2 weeks later we were at the ER being told he’s in end stage heart failure.

His one year anniversary is coming up in September so I’m reliving ALL the emotions. It’s a whirlwind. Bear with me. Or ...
08/31/2026

His one year anniversary is coming up in September so I’m reliving ALL the emotions. It’s a whirlwind. Bear with me. Or block me 😂✌🏼

There are certain words or phrases as a medical parent that you neverrrr forget.

After your child has been intubated and needs a machine to breathe for them hearing the words “he’s on room air” feels almost impossible to describe.

Room air means he’s breathing on his own, without oxygen from a machine helping them.

“Room air”

It’s the small bit of relief you get realizing that the machine is off.
The relief of seeing their chest rise and fall on its own….
The relief of knowing their body is doing something you once weren’t sure it could do without the help.

It’s a relief but also that fear of backtracking still lingers. Because you still watch the monitor like a hawk. I slept on a blow up mattress on the floor next to his hospital crib so at night I used to turn the monitor to angle it so that I would see the screen from the floor. No matter what time I woke up throughout the night I could put my glasses on and see his numbers.

I guess to someone else, “room air” might sound like a routine medical update.

But to any parent who has sat beside an intubated child for hours, days, weeks, months…it’s monumental.

I spy Cal’s name in the photo

Calvin did IVIG and 6 months of cytoxan.He still receives monthly infliximab infusions and gets methotrexate weekly. Alo...
08/30/2026

Calvin did IVIG and 6 months of cytoxan.

He still receives monthly infliximab infusions and gets methotrexate weekly. Along with his daily heart failure meds.

I had never even heard of vasculitis until they diagnosed him.

First week of school for sisters (3rd and 1st grade) brought home a runny nose for Cal but he’s not slowin’ down! I had ...
08/30/2026

First week of school for sisters (3rd and 1st grade) brought home a runny nose for Cal but he’s not slowin’ down!

I had to share this picture of him doing a table drive by full speed ahead.

08/28/2026

When you get caught red handed…
…literally…

That’s a red light therapy light 😂

We took a 2 night family vacation to our fav RV resort (staycation?) it was just 3 hours from home 😉. Last time we went ...
08/22/2026

We took a 2 night family vacation to our fav RV resort (staycation?) it was just 3 hours from home 😉. Last time we went Calvin was not even 2 months old so he actually got to run around and play with his sisters this year. It was a nice little family time break from it all I think we all needed badly before school starts back up.

The VAT had a hard time getting his iv in for his last infusion so that’s why his arms are all bruised up. I smiled nicely at all the stares we got 🫠

Before heading home we had to stop at the aquarium to see the sharks!

He’s got a pretty gnarly tan going on. You can tell he typically wears a long sleeve rash guard to swim 😂

08/19/2026

Last night his big sister was trying to teach him how to find his show with the voice feature on the remote. Oh boy 😅 Mr Independent.

Any guesses as to what he was requesting? 🧡💙

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2301 Erwin Rd
Durham, NC
27705

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