Jose’s Big Brave Journey

Jose’s Big Brave Journey José is a dynamic, silly, sweet, wildly playful four year old boy with a big problem.

Just pictures of family life. C💚rtez Life. Br💚thersI had to AI pajamas on my sleepy babies.
09/20/2026

Just pictures of family life.
C💚rtez Life.
Br💚thers

I had to AI pajamas on my sleepy babies.

Do you know a store manager or business owner? Are YOU a manager or owner?Would you ask if they would post this fundrais...
09/19/2026

Do you know a store manager or business owner? Are YOU a manager or owner?

Would you ask if they would post this fundraiser poster? Ideally, with a small container to collect coins or dollar bills as well.

You can message or comment below and I can drop a flyer off next week!

EDIT: I updated the flyer a bit bc we know the surgery date now!

09/18/2026

We are launching the first major fundraiser TODAY! (Fr 9/18) The video is long but watch as much as you can bear 😆 and please let me know if you would be willing to HOST a calendar! Info in video.

09/18/2026

Can you host a calendar fundraiser? 🙏🏼

Thursday 9/3 1pm Swallow Test Arkansas Children's NW. On the drive to this test we got a call from the sleep lab in Litt...
09/08/2026

Thursday 9/3 1pm Swallow Test Arkansas Children's NW.

On the drive to this test we got a call from the sleep lab in Little Rock. There was a cancellation for this evening. Would we like to come tonight? OH! Ummm *insert brain calculating drive time plus test times plus potty stops plus food eating plus 10% for unknowns* ok, sure!

Back to this swallow test. So, he is supposed to eat something covered in barium powder so they can watch the food travel through his system with their gadgets… this does require cooperation in eating things in a weird room, with a group of new people, sitting in a weird chair, and having food dipped in weird white powered. High five to anyone who can tell me how that went. 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 🖐🏼🖐🏼🖐🏼🖐🏼🖐🏼 ok ok. You all get high fives. My hand hurts geez. Plan B was visually observing him eat or drink. We went to a more normal weird room and he ate a segment of a mandarin orange and drank some tea. He coughed kinda a lot with both. They asked if that was normal. If he typically coughed after eating or drinking. My initial answer was no. Then the nurses stepped out to do something and Joe and I talked for a couple of minutes and realized he does actually cough quite a bit so four minutes later I’m telling the nurses that when I said no, he doesn’t cough a lot I meant he actually coughs a whole lot. 🙄 Anyway, while the barium test was unsuccessful the observation won us a free trial of liquid thickener for all the things not thick. He will also start swallow therapy with his speech therapist at school. While he isn’t aspirating he is essentially choking when he eats and drinks and the coughing is his body correcting that. I used to be self deprecating about my lack of parenting skills whenever I shared that he still takes a bottle at night. My reasoning was if it’s a comfort item, I have no intentions or desire to make him uncomfortable. I had no worries of him going off to college still taking a bottle so I did not put any importance on “weaning“ him. Because we had in fact, attempted multiple times to remove the bottle as he got older.  It was just never important enough to me to make him so uncomfortable over it losing it. In my mind, it was always fine with me whenever he’s ready. Turns out it’s actually one of the ways he has been getting the majority of his nutrition because of what we now know with his challenges swallowing. The reason he eats so little during meals is not because he still takes the bottle. it’s because it’s hard for him to eat it and it’s easy for him to drink the bottle. We have eased up on our one line of “bottles at bedtime” and he has been asking for them more during the day now too.

I’m thankful for the challenges in my life that made him having comfort item seem like absolutely no big deal and I’m also tired of seeing in hindsight. I told the nurse “no, he doesn’t cough” when yeah he coughs a lot. I missed it.

Also, he calls it his baby. 🍼 and you can see best in the second picture his “milk mustache” He always takes a piece of his hair and wraps it above is ‘baby’ on his upper lip. Hence the nickname milk mustache 😂🥸

09/08/2026

Thursday 9/3 8:45a Zoom with our plastic surgeon. The gist: ima take your baby’s skull out of his head. Ima put it back, promise. Oh, I think I’m gonna do a little extra taking out around his eyes since it’s already showing he has so much pressure in his eyes. I can’t say for sure but prolly gonna do this sooner than later. End of Oct or early Nov -ish.

Now that was all the technical doctor talk condensed to what my brain heard.

Note to self: next discussion on removing child’s skull should not be at 8:45am, not be on zoom and not be immediately followed by a road trip to Children’s for another onsite appointment so you have nothing else to think about but what you just heard while you drive.

🫩

However, find the joy in all the things. Our family has a fun tradition when we go through the Hopper tunnel we do something fun/silly. Say the alphabet backwards, spell your name backwards, name car parts in alphabetical order. Sooomething. lol. Well, at 4 & 5 we lower the expectation but not the fun. In this video we did what they do best. 😂

It was 30 seconds my mom brain was free and present. 💚

Mom journal. I have insomnia. I can fall asleep with meds. However, last night my back was getting a little cranky so I ...
09/02/2026

Mom journal.

I have insomnia. I can fall asleep with meds. However, last night my back was getting a little cranky so I opted to take pain meds instead of my sleepy pills. I can take both but it’s just not the “best practice”. So if I really don’t have to I don’t. So what did I do for the 5 or so hours it took for me to fall asleep? This. I watched them. I kissed em squished them whispered I love you, you’re so beautiful. Traced their faces, booped their noses, prayed over them. Rested my lips on José’s forehead for as long as I could hold my head there. Then I rolled over and closed my eyes. 4 minutes later I rolled back over and did it all again. And again. And thought how nice it is to have insomnia, lol. 🥹

Journal entry from momma and an update to the schedule.Pardon me while I vomit.🤮 Geez. I just got a call from Children's...
09/01/2026

Journal entry from momma and an update to the schedule.

Pardon me while I vomit.🤮 Geez. I just got a call from Children's (again) to schedule ANOTHER pre-op appointment. Some how I forgot about this one. But I did know it was needed. This is the one that kicked this whole adventure off after all. So, to recap, 2 weeks ago, after a routine eye exam the optometrist recommended we see the pediatric ophthalmologist because Jose had bulging optic nerves. That referral went in and the first available appointment with Pediatric Ophthalmology was MARCH 8th. Cool.

3 days later were admitted to Children's.

2 weeks later March 8th becomes Sept 4th. Cool.

I'm ok. Its ok. I mean the vomiting likely has nothing to do with having a super sick kid and is more likely because I found out today the Phoenix 7Brew is still giving away 4 free coffees per person and I've had more caffeine in the past 9 days than the rest of my life combined. Because funny story... its limited to 4 per person but it's not limited to once per daaaaayyyy... I feel your judgement and i do not care 🙃😋 Do not question God. He has given this momma free treats and she has partook to the fullest.

OK, I've gotten all these thoughts out of my brain and I must return to paying bills and adjusting the budget because NOW I GOTTA SEE IF WE CAN SWING A HOTEL ROOM FOR 2 NIGHTS so Joe can come too and we don't have to drive to NWA Thursday then Little Rock Friday AND again Saturday.

**JOURNAL ENTRY FROM MOM**8/302026Good Morning. José has a new message in MyChart. (sign in) José’s appointment with Pla...
09/01/2026

**JOURNAL ENTRY FROM MOM**

8/302026
Good Morning.
José has a new message in MyChart. (sign in)
José’s appointment with Plastic Surgery on Sept 22nd is canceled. Attached note: The neurosurgeon requested we see José on September 3rd. His appointment is at 8:45a with the Plastic Surgeon.

The wording of the note and, mostly, that it was sent on a Sunday morning made my gut bubble and my head tilt because one side of my brain was trying to decipher every nuance of each syllable to glean any underlying meaning. *insert disaster planning mode* My brain determined I needed 3 things pretty instantly or the world would surely crumble.
1. Coffee, for me. 4 smalls from the new 7Brew on Phoenix Ave giving free drinks all week, and a red bull for the drive over there. 2. Dog food. I need the dog to survive during the times I'm going to forget he exists.
3. Hair ties. Right now. I knew the second brain surgery was mentioned that we were going to “lose” the hair. I didn’t care. But I chose to be a bit excited to finally get to donate his hair! This change to his appointment, however, flashed an image of his hair cut and lost to an operating floor. Uuuhgggg. No. I genuinely am not attached to his hair being on his head but I CAN NOT let it go to waste. So hair ties were the answer I came up with. If I have those on hand I can get his hair washed, braided, and cut in any amount of time short of an actual immediate emergency. I walked out of the bedroom dressed and told Joe I needed to go. He nodded knowingly without needing much explanation.

Coffee acquired.

Sam’s next for dog food. Uh oh. I should just get several bags to last a few months. Good idea. Oh, then I’ll get enough stuff for the humans in the house too, for several months. Smart. Ok. —------------- Here is where I need to introduce Gladys. Gladys is not the voice of God. Gladys IS the angel God assigned to me to talk to me how I need to hear things so I’ll listen. Gladys has special permissions… so when I share any future conversations with Gladys I’ll take a clorox wipe to her words to get most of the dirt(y) off ‘em. She’s saucey. I need her just as she is. Now, returning to the aisles of Sam’s and the brilliant ideas I’m coming up with. Gladys whispers in her sweetest gentlest voice “Where are you going to keep all this shtuff when you spend your rent money on it, dummy?” She and I argued. The negotiations ended with me being allowed to buy 2 bags of dog food (4ish week supply), a 5lbs bag of shredded cheese (because Jose loves him some shredded cheese), and 4 more bulk supply items for Juan’s breakfast and lunches.

We can still pay rent. Thanks Gladys.

PS I named Gladys after a lady in Austin Texas that was a regular caller on the Ellen DeGeneres Show. If you don’t know and need a giggle, google.

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Fort Smith, AR

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