Cambrie Munoz

08/10/2026

Lissencephaly awareness day is less than a month away. I’m usually sharing more about it for awareness by now, but I’m behind!

08/06/2026

A friend told me recently “why is your life always the next plot twist.” And we laughed off!
Let’s talk about Cambrie today. We did get her car seat ordered. We were actually right at AMB her typical hospital.
Nearly 2 hours from home.
Once Cambrie gets home she decides to have what we are pretty sure is a dysautonomia flare. Temp dropped to 92.6, heart to 38. She ended up getting to fly, but to Greenville because of storms in Atlanta.
She’s warmed up some with bair hugger, her heart rate has improved, she’s getting some fluids. And she’s looking much more Hispanic. She was really looking like her Caucasian mama when they left with her.

Just one big plot twist. She’s not with her regular friends this time but they all think she’s so stylish and cute. Her nurse just told me she looks so much better than she did when she came in. Again, True Cambrie fashion 🦄. She plays by her own rules and writes her own story. She’s making history. While she scares me to death I’m still so glad she’s mine!

Pray for Cruz and Camilla. I know Cams has got this but we always love prayers for her. But Cruz was pretty worried about her, Camilla was heartbroken and wanted to know why this always has to happen to her.

(Pid of her newest side kick and her on better days)

08/06/2026

We have waited 11 months for today’s appt for an adaptive car seat fitting, ya girl said “bet,” today with the sass! She questions my shenanigans regularly

08/02/2026

Ive been overwhelmed lately. Trying to keep up with everything; Cambrie’s medical stuff. There’s just so much. I want to document every single thing because it’s the only way I know to get it right and figure out exactly what is working. Trying to get Cambrie back in school. It’s felt like a lot!
Someone shared with me like an AI assistant by citizen health, and it’s been amazing. I’ve gotten everything documented and organized in one place. I tell it of any changes, it documents every seizure, heart rate episode, temperature episode etc. It literally gives me a pdf of everything for each appointment.
I was logging everything for yesterday and all the seizures and this popped up the end because it asks how are you are doing and I asked questions about one of her diagnosis . I can definitely say it’s heavy, but I hadn’t considered it that way. Cambrie is a game changer for all the Cambrie’s after her. And that’s scary as heck. But like what an honor too.

Because I honestly didn’t believe the numbers could be right. So the 3 doctors said it and Ari fact checked it too. I guess in a way you don’t really want it to be true.

When I was young and naive I used to pray I would help Change the world. Now that I’m old and tired I’m learning me and Cambrie might play a role in changing it for the next Cambrie

07/25/2026

Cambrie and Elly

07/23/2026

Yesterday was infusion day for Cambrie girl. We met with her doctor and tried to decide how beneficial IVIG is for her. Her levels have been good. We went back through her hospital stays since we started in October, and we figured out that while yes we still go often the duration and even for most of the stays the severity has been less. So we are going to increase her dose and transition to infusing it at home weekly.

We are struggling hard with the dysautonomia stuff, and finding a provider to manage it has been even harder. I asked for a meeting with the whole care team. I can’t keep going back and forth and everyone sending me to someone else when we get in a crisis. She said it would take some time but they would get it set up.

She’s also going to refer us to a dysautonomia provider at Wellstar in Atlanta. If anyone knows of anyone out there please put their name and location below.
She did tell us due to how rare Cambrie truly is this may not be anything we fully manage but we just deal with when the symptoms come. That she will likely still have hospital stays. I know God has a purpose for her but I feel the responsibility of being her mom is heavier sometimes knowing I can’t fix it for her.
I feel like it’s me and her against the world trying to learn it all and try it all until we find the one thing that works.

07/12/2026