Ellie-Ann’s Angels

03/25/2026

I spoke too soon with Ellie last night 😩
Today She had seizures back to back and continued to jerk for an hour and a half after.
Her O2 dropped and her heart stayed low for 3 hours.(60bpm)
Her color was still good and her O2 didn’t go under 94 so she was good to stay home.
Her nurse came by and checked her out and told me to just keep documenting and watch her closely.
If she starts getting more lethargic or pale/blue lips i am to call 911.
She has been fine now since 3pm so I’m hoping it was just a bad few hours ,
first seizure today started at 10:56 am .
If you are still reading this post hopefully you’ll join us tomorrow in wearing purple for epilepsy ! 💜

03/25/2026

Since starting vimpat EA has only had 1 seizure in 7 days !
Prior to starting it she was having them either daily or every 2-3 days.
Her mood and appetite have also gotten better since stopping Keppra !
I’m so happy we made this change & our next goal is to be completely seizure free !

03/11/2026

It’s been a busy week already and it’s only Tuesday !
We have said Goodbye to one seizure medication (keppra) and have started a new one (Vimpat).
We are not sad to see Keppra go as it took a toll on her and did not help the seizures .
We are hoping for Vimpat to do its job but if not another one will be added along with this one
yesterday we went for another speech evaluation and we are good on that until after her next surgery .
Her speech is getting so much better !
Tomorrow is a virtual appointment and also her nurse will come in for a visit and then we are done with appointments for the week.
Everyday I get with this miracle is one I cherish ❤️ I love you Ellie Ann

03/06/2026

We had our post op check up today just to be sent over to scheduling for another surgery .
Surgery will be done within the next 2 months to fully repair the hole in her throat .
The surgery back in January was just a temporary fix and this time we are hoping for a full repair and no other surgery needed in the future.
The surgery will last 1-3 hrs and will require a 2 night minimum stay in the ICU .
This fix will hopefully fix A LOT of EAs issues not everything of course but possibly the obstructive apnea and speech issues. I’m so thankful for a team of doctors that is determined to get her fixed up .🙏🏻

02/24/2026

Ms thing had her first visit at the actual dentist today .
She’s been having fluoride put on every 6 months by her pediatrician but today we met her dentist.
We will go back in 6 months for a revaluation .
at this time there’s no major concerns on a surgery .
BUT in the near future she said she would try and do it the same time as another procedure to prevent from her being put under anesthesia so many times . ❤️ she climbed in the chair and took her socks and shoes off like she was at the house .🤣

02/12/2026

Today we had a neuro appointment.
We are Changing seizure meds 🙌🏻, but will continue on with keppra plus Vimpat for 4 weeks until she is completely weened off Keppra .
The new medicine causes a low heart rate. She already has issues with that so an ekg will be done in a couple of weeks .
If seizures are still happening after the medicine switch she will be put on an additional medication.
A Brain MRI will be scheduled within 2 weeks. She will be put to sleep for it and will stay overnight for observation .
Im happy we are finally having a repeat MRI but im nervous to see the results from It .
3 genes came up on genetic testing and 1 of the ones came from either me or her dads side .
So we will have to do a mouth swab next to determine who it came from and to look into it more.
I’ll announce the genes on a later date.
I feel like it was a good appointment because she is finally getting off keppra and finally having a mri scheduled.
One day at a time, one appointment at a time, one procedure at a time, we will get through this my sweet Ellie Bellie 🩷

02/09/2026

01/29/2026

After a visit with her nurse and talk with neurologist .
Our medicine plan will go like this ….
Rotate Tylenol/ Motrin, give both inhalers 2 puffs once a day, Flonase, allergy meds, zofran, keppra 2x a day, and now breathing treatments . 😰
Hopefully this will knock out whatever respiratory infection she has on top of recovery.
& we won’t have to have another hospital stay . 🙏🏻
Baby girl is being hit hard right now .

01/29/2026

At minimum, EllieAnn is having seizures at least 3 times a week.
Last night’s episode was worse than most.

She was so confused coming out of it — scared, crying, shaking, and gagging. I was terrified she was going to vomit and hurt her throat since she just had surgery.

It took about 40 minutes for her to calm down, and another 20 minutes before all her numbers finally got back where they should be. Watching her go through that is so hard.

Her doctor is going to increase her current meds one more time, and once she’s healed from surgery, they plan to switch her to a new medication called lacosamide.

If anyone has experience with this medication or has a child who’s taken it, I’d really appreciate hearing your feedback or advice. Thank you all for the continued prayers and support for our girl.

01/26/2026

I’m not sure I fully understand or even believe in SIDS the way it’s explained sometimes.
Maybe it does happen… but I also wonder how many things get overlooked.

What if some babies can’t tell us what’s wrong, and we only find out later — when they’re old enough to talk or point to what hurts?

You notice a lot of children aren’t diagnosed with certain conditions until age two or older, when they can finally speak for themselves.

For two years, my child lived with a laryngeal cleft and we didn’t even know. (I had a feeling she did but wasnt sure.)
I can’t imagine what that must have felt like for her. She constantly had respiratory illnesses, serious choking episodes, breathing problems, was always out of breath, and struggled to gain weight.

By the grace of God, she’s still here. She’s aspirated before, but thankfully it didnt cause any major damage.

And it wasn’t just that — her seizures went unnoticed for over a year too. Again I noticed them but was told they weren’t seizures .
Thank God that also didn’t cause major damage.

It just makes me wonder… what else could be missed?

Maybe I’m just overthinking, but it weighs heavy on my heart. Do babies really just pass away in their sleep for no reason? Or sometimes is there an underlying issue that wasn’t caught in time?

If you ever feel like something isn’t right with your child — speak up.
Keep pushing until someone listens.

I’m just venting, some things make you wonder 💭

09/27/2025

Ellie-Ann’s Sleep study results are in .
I haven’t spoken to her dr on the phone but I did get an email .
Diagnoses - Primary central apnea/ obstructive apnea
22.5 apnea events/hour. Her longest episode lasted 10 seconds.
(She stopped breathing around 22 times an hour in 10 seconds intervals)
Thankfully she came back on her own without intervention.
Her oxygen got down to 85
Heart rate as low as 58 and high as 150 !!!
All during sleep .
She also had seizures while hooked up .
She didn’t sleep as well that night. I remember her waking up quite often so I can’t imagine what her numbers would be on a good night of sleep .
In the drs words “The results of this study are worse compared to her prior study”.

The dr has given her the go ahead on surgery/ exploratory surgery.
I’m sure I’ll know more Monday but I wanted to post this today because I’ve been asked by so many if I’ve heard anything yet .
Thank you to everyone who still prays and please continue ❤️

09/16/2025

Sleep study #6 ❤️