Living on Lito Time

10/04/2026

42 itchy backs.
10 itchy heads.
2 itchy belly’s.
8 breakout dance sessions.
4,765 being worried about what siblings are doing.
10,000 questions about anything other than what he should be doing.
0 questions about the assignment.

😮‍💨 annnnnnd we got one assignment finished.

10/03/2026

Lito update:

First - Lito was so excited to see me after his first day back!

“Moooom! My best friend!!”

🥹🥹🥹

Lito’s counts were still a little high on the c reactive protein but Dr. O’Grady said he wasn’t concerned since everything was tending down.

One thing I noticed is the results are measured differently at the clinic vs OU and I don’t like that they’re hard to compare.

Lito’s strider is getting louder, but overall he seems to be doing great.

I’ve said before BUT - the trouble with Lito is that he is so strong and resilient that we sometimes don’t realize how sick he actually is.

I’ve heard from multiple doctors about how Lito just talks and laughs with them, right before he’s being intubated. If you just walked by before the procedure, you wouldn’t realize he was in critical condition.

That’s what makes everything harder.

Our boy is such a light in this world, and I love hearing about your experiences with him.

Thank you for supporting him, supporting us, and following along with his journey.

Here’s to hoping we stay out of the hospital and get to spend this fall season together at home. 💙

09/29/2026

My favorite view is this kid being home.

Every time we pull up from staying at the hospital, I get overwhelmed with emotion. We made it home. Thank goodness.

He got to come home yesterday and he spent some time at home and then went to see his abuelita.

We love you guys so much, thank you for the continued support 🥹

09/27/2026

09/27/2026

Hi friends:

Wanted to do an update before Lito and I call it a night:

We were supposed to go home today, however, Lito had a fever multiple times today, so, they gave us the choice to stay one night or go home.

We asked for labs to check his white cell count, remember, his cell count has been in range until last weekend. Here have been the counts since then:

Last weekend - 18k
Thursday morning - 28k
Today - 35k

The doctor had told the nurse right before the counts came back that she would feel better keeping him overnight for observation, and after seeing his white cell count, we were thankful.

She already put in an order to check the counts again at 6 am. They’re looking specifically at certain markers to see if the elevated count is due to pneumonia AND steroids or if they need to rethink the treatment for pneumonia.

On the plus side -

Eosinophils - ZERO! 👏🏼👏🏼👏🏼

I’ll update in the morning and let’s hope our boy can have a good night!
Xo- Lito and mama!

09/26/2026

Listening to their little Roblox conversations is one of my favorite things.

You’ll almost always catch Lito playing with Ember and Cooper, and now they’ve created a group chat so they can all be together at the same time!

Yvonne, Bridget - this morning I heard Cooper say “my dad is really cool, right Lito?”

Lito - “yeah, his dad is cool!”

💙💙💙💙

09/25/2026

Oh, Lito. Our sweet angel. He finally got the all-clear to eat so we paid seven million dollars to DoorDash a happy meal.

It worked. He’s happy. Definitely worth the kidney I sold 🤣🤣🤣

He’s doing better after receiving heliox. He’s been off the oxygen but they realized it drops when he’s eating so he’s on a low flow.

Guys. I miss my kid. 🥺

09/24/2026

Please say a quick prayer for Lito. He woke up this morning and started throwing up. Emanuel ran to grab the pulse ox and Lito’s oxygen is fluctuating between the high 80’s and low 90’s - and his little heart rate has been over 160 (in the 170’s). They’re on their way to OU. 😭

(We are hoping this is the hard day 4/5 they initially wanted to keep him in the hospital for)

09/19/2026

Friends, our boy is back. He was feeling under the weather and we had him tested for strep, RSV, and Covid and it was all negative. However, when we went to get his meds today, he was walking and got really pale and kind of lethargic. We took him to the ER and his oxygen was 85 and his blood count was high. They think he’s fighting a virus.

So, we got admitted, they put him on helox, which helped tremendously.

He’s sleeping, finally.

Let’s hope this is a quick visit and his blood/oxygen levels go back to normal. 💙 @

08/30/2026

I want to do a quick update for everyone.

The last visit to the cardiologist was good news, as in - he’s stable - meaning his heart didn’t improve but it didn’t get worse either.
His blood clot is still there, even though we’ve been on blood thinners since March. However, it decreased in size by a very small amount. Still - going down is better than going up.

His second round of Botox required him to be admitted due to Dr. Ramjee removing scar tissue from Lito’s throat.

His oncology appointment was … not bad but also his eosinophil count has been creeping up. Normal range is up to 6, his is now at 4.8. (Keep in mind it was in the hundreds when this happened so, we aren’t panicking, just watching)
Also, he does have an iron deficiency and we aren’t sure if it’s chronic illness anemia or just a bout of anemia due to his lowered appetite.
We removed the steroid altogether, and now he has visits every two weeks instead of monthly to keep an eye on his counts.

Lito was also able to come off two heart meds so we can see how his function does without them.

He has an exercise stress test next month to see how his heart does, an mri at some point to check the overall damage of the eosinophilic myocarditis, two follow ups with oncology, and a post op with ENT.

Please keep our boy in your thoughts as we move through the next few months. 💙