Ellie-Ann’s Angels

09/03/2026

Letter about her swallow study below ⬇️

09/03/2026

09/01/2026

Swallow study results… 💔

Ellie is aspirating when she drinks liquids. A good bit of what she is drinking is going into her airway and lungs instead of going down where it’s supposed to. So now we have to start thickening all of her liquids, and it’s looking like she may need another surgery.
We really thought the surgery in June was going to be the fix to this !

She coughs sometimes when she drinks, and sometimes she doesn’t. Today she didn’t cough at all, so I really expected to get good results.

But after watching the video from the swallow study, I could actually see the liquid she was drinking going into her airway.

This is what they call “silent aspiration.” She isn’t always coughing or showing us that something is going where it shouldn’t. And honestly, that part scares me.

I really thought today was going to be the day we graduated from swallow studies. I thought we were finally going to get some good news and put this chapter behind us.

Instead… we’re back at square one. 💔

Now we wait to hear from her doctor so we can discuss the next steps and whether another surgery is going to be necessary.

In the meantime, I’ll be purchasing what we need to start thickening her liquids and doing everything I can to keep her safe. Thanks for the prayers 🙏🏻

Peep below at the doggy friend she made at the hospital today .

09/01/2026

Not too long ago her wrist were too small to wear her own hospital band. Now look 🥺.
We are here today to do a swallow study.
It’s been over 2 months since her throat surgery , so this is to make sure everything still looks good . 🙏🏻

08/28/2026

Something I’ve never mentioned on Ellie Ann’s page before… mostly because I absolutely HATE the “C” word. ❤️
During Ellie’s first round of genetic testing, Lynch syndrome was one of the first things that popped up.

“an inherited genetic condition that significantly increases the risk of developing several types of cancer at a young age “

I haven’t shared this with many people because, honestly, it’s something I’m still learning about myself. But I wanted to put it out there in case there’s another mom, dad, or family going through something similar. Maybe we can connect, share what we’ve learned, and help each other along the way. 😊
I still don’t know a whole lot about Lynch syndrome, but I do know that it’s something Ellie’s doctors have been keeping a close eye on and monitoring. And right now, we’re good. ❤️ I’ve posted some pics below describing what it is… I’m thankful we found out at an early age for early prevention but it’s still scary …

08/27/2026

Here’s a little Ellie Ann update!

Her sleep study results came back, and we actually got some GOOD news! 🙌🏼

She had no signs of obstructive sleep apnea, which is amazing and means her surgery helped! 🎉 However, she is still having central apneas, meaning her brain is still not consistently signaling her body to breathe while she’s sleeping. She had pauses in her breathing lasting around 20 seconds, happening about 11 times an hour during the study.

Because of this, her pulmonologist wants her to continue wearing oxygen at this time.

Now for the not-so-good news…

Since Ellie was sick last week, her MRI, neurologist appointment, and eye appointment all had to be rescheduled. They’ll now be happening over the next couple of months.

This Monday, we’re heading to Atlanta for another swallow study to see how she is doing since having surgery in June. We’re really hoping to see some improvement there too! 🤞🏼

I also received her latest blood work, and unfortunately, she is still anemic. They’ll be checking her levels again in about 3 months.

So, we’ve made some progress, but we still have a ways to go.

One appointment at a time. One test at a time. One step at a time.

Thank you all for the continuous prayers, love, and support❤️

08/20/2026

EA had a good night last night. Thank you for the prayers ❤️

08/19/2026

A scary afternoon with Ellie Ann 💜

I called the ambulance on Ellie today and they just left. I couldn’t get her to wake up, and the EMTs couldn’t wake her either until they poked her finger to check her blood sugar.

Even then, all she did was open her eyes and look around. She didn’t cry, move, or really respond to us. Her blood sugar was low, and after they gave her something to drink, she eventually got up and started moving around.

As of right now, we are home and she is still awake and doing okay. The EMTs told me that if it happens again, they are coming back to get us and take her to the hospital.

I’m not going to lie, this scared me. Watching your child be that unresponsive and not being able to wake them up is a feeling I never want to experience again. 😭 This was not the first time I’ve seen her this way, but it’s not anything I like to see.

Please keep my girl in your prayers tonight. 🙏🏼💜 We are watching her very closely and praying this was just a scary moment and that she continues to stay awake and act like herself.

💜

04/12/2026

The girls fell asleep while watching a movie the other night and felt Ellie starting to twitch . This is is a short seizure after I put her in the bed she was having convulsions and I could feel the bed shake .

04/12/2026

What it looks like after having a seizure .
At one time her oxygen got down into the 80s and her heart rate 60.
These are all from last night and she was finally having steady regular sats around 5am.
So for the ones that ask me . Yes Ellie is still having issues. Some you can’t see and some I take care of at home.
It’s so frustrating I wish I could fix my baby .