Nov 21, 2025

10 months old!

By the grace of God, we haven't had many things to update on in the...

Oct 01, 2025

Post-nose job day 10

pediatrician for the remainder of this month. He is still being fol...

Sep 17, 2025

Post-op day 2

We are 2 days out from John’s biggest surgery and from a medical pe...

Sep 15, 2025

Surgery #9 ✅

Surgery #9 ✅John’s surgery went great and he’s resting in PICU for ...

Sep 06, 2025

Plastic surgery, part 1.

John had an appointment yesterday with a plastic surgeon that speci...

Aug 25, 2025

Baby steps.

When we last updated one of our major concerns was John’s adrenal f...

Jul 28, 2025

Hurry up and wait.

John’s adrenal gland function has been a major concern throughout t...

Jul 18, 2025

6 months!!

6 months.Somehow, these 6 months have flown by, but it’s also felt ...

Jul 09, 2025

FIRST MONTH AT HOME. 🩵

Today we celebrate John’s first FULL MONTH AT HOME. 🥳🥳Despite battl...

Jun 25, 2025

5 months (+1 week)

John turned 5 months old last week and is having a blast living his...

Jun 11, 2025

Discharge day (part 8…)

And that’s a wrap for this stay at hotel CHOA! We feel equally terr...

Jun 10, 2025

G tube. ✅

We are out of surgery and napping! They had no issues placing his G...

Jun 07, 2025

Next steps.

We were hopeful that John would be in a great spot today and ready ...

Jun 06, 2025

The worst update.

I’ll start by saying: John is out of surgery, enjoyed himself an ex...

Jun 05, 2025

Surgery #7 🫠

After a JOYOUS 3 weeks at home, we find ourselves prepping for John...

May 20, 2025

4 months old!

John is 4 months old!Despite a 2+ week cold and brief hospital stay...

May 12, 2025

Home (again)!

We are now on week 3 of this “typically 5-7 day” virus, and still n...

May 09, 2025

Virus day 13

It’s extremely disheartening to watch your baby decline physically-...

May 08, 2025

Virus day 12.

Despite our best efforts, after 19 glorious days at home as a FAMIL...

Apr 25, 2025

HOME.

We’ve had lots of people checking in to see how John is doing so we...

Apr 17, 2025

Surgery #6 ✅

John is back from surgery and having a fabulous (drug induced) nap....

Apr 16, 2025

Surgery #6

John has had a fabulous week+, with the exception of a few hiccups....

Apr 10, 2025

(Almost) 12 weeks.

It has been two weeks since John had his stents placed in both side...

Apr 08, 2025

Hurry up and wait.

Fortunately, John has stabilized from a breathing perspective and w...

Apr 04, 2025

Surgery #5

John’s procedure is finished and he’s stable, was removed from the ...

Mar 30, 2025

Post-op day 4

Just like we knew they would be- the nasal stents have been an issu...

Mar 29, 2025

Post-op day 2-3

It’s been a stressful day or so for John (and his parents)… after s...

Mar 26, 2025

Surgery part 4 ✅

The whole “stay at home and wait until surgery day” plan sure did n...

Mar 25, 2025

Home again. (But not for long.)

John was most recently discharged from the hospital last Thursday. ...

Mar 18, 2025

Hospitalization, part 5 (I think?)

John is two months old today! What a life he’s had already….We were...

Mar 12, 2025

Finally home!!!

It only took 4 different ICU stays- but we have finally gotten John...

Mar 05, 2025

Discharge day fail, again.

After looking absolutely fabulous for a day or two, we were tentati...

Mar 02, 2025

Wait and see.

We are now 2 days post dilation.It was our hope that the dilation w...

Feb 28, 2025

Surgery #3 ✅

After a short ICU stay last week with Rhinovirus, we were excited t...

Feb 21, 2025

4.5 weeks old

A week ago today, we were celebrating John’s discharge from the PIC...

Feb 11, 2025

Post-op day 5

Happy due date to John!It’s crazy to think about all he’s been thro...

Feb 09, 2025

Post-op day 3

It has been 3 days since John’s big surgery and everyone is very pl...

Feb 07, 2025

Hospital day 6

Our biggest win to date- SURGERY WAS A SUCCESS!the stents were plac...

Feb 05, 2025

Surgery

After a hard day for John, it was decided that it’s best to move fo...

Feb 05, 2025

Hospital day 5

Our goals for today were to wean down John’s oxygen to a point wher...

Feb 04, 2025

Baby John

A backstory- for anyone wishing to read.Our John was born on Saturd...