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Jemma’s Journey, Sublette, KS (2025)

08/21/2025

Surgery went great! 🎉

The VNS is just above her pectoral muscle and there are layers of stitches underneath her skin, the purple over the incision is a medical skin glue that will fade after a week or so. So we are on the long ride home now to rest for a couple weeks!

Thank you all so much for your prayers and kind words! 💜 Please pray for her to have an easy, uncomplicated recovery!

08/21/2025

Today is VNS implant surgery is today!!

Please pray that most importantly, this surgery will be successful in stopping her seizures. Also for a good sedation process and wake up! The surgery itself will take 2 hours, then after a two week recovery at home she will come back for her post-op check up and the neurology team will program, turn the generator on and it will start working! It will deliver a 30 second stimulus every 5 minutes.

A quick recap of her last few weeks-

Jemma had an X-ray at her last inpatient stay originally to check on her VP Shunt, that showed some mild heart enlargement, so she had an EKG and Echocardiogram done on tuesday to make sure everything was still okay. She had a mild ASD as a baby, that has since resolved on its own! Everything was normal!

Jemma finished the steroid treatment for spasms and is up to full dose of the Vigafyde medication, as well as her two other seizure medications, we’re hoping to get off at least one after the VNS is in full swing! She had a very rough couple of weeks at the end of the steroids after the bowel cleanout.. we almost brought her to the er she was so unlike herself and generally so miserable. But we waited it out and kept in contact with her doctors until she slowly recovered!

She started therapy at AbilityKC! She has the same amazing therapists she had last year and has already made great progress! Since treatment brought down the inflammation in her brain, she has become so much clearer and started saying so many more words! Even please and thank you independently! They fit her for a new AFO brace on her left foot, and are practicing stairs and better coordination with her. She’s even tolerating them wrapping her right arm in order to work and strengthen her lefty! This is a priority since she really keeps that left arm tucked away most of the time, we don’t know what sensation she has through it but know that it’s weak and uncomfortable for her to use. As soon as she’s cleared from neurosurgery, she’ll have the whole month of September to work hard at Ability!

08/02/2025

We’re on our way home, she was discharged a little after noon. She’s still working on cleaning out fully so we’ve had to stop many times to change her. She’s not feeling super great still though, she’s cramping pretty bad, and she’s got a raw diaper rash and cries because it burns so bad but it just keeps coming, so we’re ready to get home and have nice bath and get back to regular routine before we have to come back for AbilityKc therapy start on Tuesday! As long as Jemma feels up to it anyway, we’ll see how the weekend goes. Thank you so much for all your prayers and sweet comments! It helps us to feel less alone in all of this with Jemma! ❤️

Also, if you have a nurse/cna in your life, give them a hug from me. They are the real MVPs in situations like this, dealing with literal explosive human f***s all day is not for the weak.. if that isn’t *washing feet* work then I don’t know what is. 🫶🏻

08/01/2025

She p**ped!! Finally! After what seemed like an entirely too big e***a for her tiny body, and some immense cramping and crying for so long she was able to get stool to pass. Only thing is it didn’t slow down until this evening. She had two baths today and 3 bedding changes and was still going. It. Was. Everywhere. She was really really backed up. But we’re just grateful it’s getting out!

She’s still on clears only diet, so she has apple juice and sprite as the Golytely solution runs through her Gtube. She’s finally getting some relief, but the penny has not passed yet, and towards the end of today the stool is drying up again which is weird. Hoping by morning she’s totally cleared out and we can go home and stay regular! Thank you for praying!!!

07/31/2025

We made it late last night and overnight they did a Shunt series to check on her VP shunt. Then started an IV for fluids, started continuous Miralax through her gtube, had her stop eating solid foods, and just did another e***a. She’s absolutely distraught, only minutes of relief in between. We’re waiting on her specialist to consult and get a better plan. Please pray something works! It was a pretty rough sleepless night for both Jemma and I, were exhausted.

07/30/2025

Day 7 and still no p**p! So we’re headed to KC, to Children’s Mercy for an inpatient cleanout. In the last 48 hrs she’s had two doses of stimulant laxative, 3 capfuls of miralax and two suppositories and no movement. It just does not make sense! Please pray we can figure out the reason behind this and get her some relief. Don’t let this smiley picture fool you, she refuses to walk and is crying and straining every 5 minutes. 💔🥺

07/29/2025

We took Jemma to the ER today because she hasn’t had a bowel movement again for 6 days now. She’s now in pain and strains so hard when she cramps every few minutes but can’t pass anything. She’s scream-crying to be held all the time. Her GI specialist recommended we take her in for a CT scan to look again for any obstruction, but there is none.

They did however, find that the little stinker has swallowed a penny. It is not in the way though, and should be passable they said. So they prescribed a stimulant laxative on top of the current daily miralax we’ve been giving, along with higher fiber, lots of fruit and juice, plenty of water, warm baths + massages we’ve been doing. The stool is not hard, but is large and she needs to get it out soon. If she won’t pass it after two days of this and another suppository, we are going to KC. The Er team and her pediatrician say that this is now out of their scope and don’t know how else to treat her here. We’re used to that by now, but because we already go back to KC next week to start at AbilityKc again that would mean we’d be away from home again.

Please pray that she can pass this and be comfortable and regular again, and that we can figure out what in the world caused this sudden issue, it just does not make sense. 💔 Thank you!

07/28/2025

Even though I walk through the valley of the shadow of death..

Shadows.. at every door we walk past

Behind one door a little boy takes his last breath, as the cancer floods his veins and stops his heart

Another one, a 7 week old baby girl, life support removed after being shaken to death

Another, a child has their last seizure and never wakes up

Shadows of death.. roaming the halls under fluorescent lights

Haunting parents’ nightmares, jolting awake in a cold sweat, eyes darting to their own baby, only calming with the assurance of each rise and fall of their child’s chest. Will they be next?

Then, the whispers of prayers that pour from the mouth of a desperate mother push against the darkness

The hands of friends reaching out to cover them in a blanket a peace

The tearful pleading of a grandmother in the middle of the night, miles away

The kind eyes of a listening doctor as they put mental puzzles together

Every moment a prayer is spoken, a force of hope becomes a barrier, a wave of light and power to scatter the shadows.

So, even though I walk through the valley of the shadow of death, I will fear no evil.

“The light shines in the darkness, and the darkness has not overcome it.” John 1:5

“I am the light of the world. Anyone who follows me will never walk in the darkness but will have the light of LIFE.” John 8:12

“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit who lives in the world.”
‭‭1 John‬ ‭4‬:‭4‬

07/23/2025

Hey everybody! I want to ask for prayers tonight for Jemma, she’s having a pretty rough time with side effects from the new medications. She’s extremely irritable and fussy, has intense cravings but hasn’t had a BM since Thursday again. I took her to her pediatrician today, she was so drowsy from the seizure meds she slept through it all even a finger prick(freaked all of us out for a bit, lethargy is scary), her sugar and blood pressure is okay, but they did another X-ray and found she has an impaction. We’re doing some more medicines for that now and she still hasn’t been able to go. She’s so uncomfortable. If she doesn’t pass it soon, we’ll end up in KC again. So, I never thought I’d be asking for you all to pray for p**p but here I am. 🙈 Please please pray she can feel better!! Thank you! 💜

07/19/2025

Spect week day 5, discharge day!

Jemma was discharged in the morning after a super early wake up at 4 am. 😴 She’s been waking up that early all week actually, after the nightly IV flush. By 8 am the EEG tech removed all the leads from her scalp and face. She of course hated this process, especially since she has some skin breakdown in a few spots and it’s likely because they used a stronger scrub when attaching them and her skin is reacting to it. The tech, who has epilepsy himself and was so kind, told me to ask them to use a gentler version of skin prep they have for the EEG she’ll have next month.

We gave her a bath and did our best to remove the superglue as much as we could but the glue tube was accidentally put down into a pile of her hair when it was placed on Monday so that stuff is really stuck. After a couple weeks at home it will all come out. She was so happy to be in the tub!

She did great in the car on the long drive home. She’s already having side effects from the meds so she’s extra drowsy but the seizures have drastically reduced already and she’s having half as many as she was before.

We made it home and she finally ate and slept so good for the first time in a week. Now we wait on more results from the scans and work on managing her side effects and keeping seizures away. Thank you for praying! ✨💜🫶🏻

07/18/2025

SPECT day 4!

Jemma had another full day on EEG monitoring and had upwards of 10 seizures today.

After yesterdays fiasco with the IV placement, then that failing during sedation, trying 6 times with ultrasound and all of those failing, today the one they finally had in her wrist started bleeding so they tried another time, only for it to also fail two hours later, while trying to push the propofol, again. So she was put to sleep with gas instead (not our favorite way to go out at all), but the anesthesiologist placed another one with one stick and it has held so far. In the ankle of all places. Sometimes I’ve wished they could do them every time, they are just so good!

I advocated for experienced techs to do the placements, comfort holds every time, cold spray vs the JTip, and ultrasound with vascular team, and even with all of that she still had to have so many sticks. Feeling pretty defeated about it tonight. 💔

As far as results on the scans and resection surgery, unfortunately there is just no way. Jemma is NOT a candidate after all for a resection. This was a huge disappointment today. We met with her epileptologist and she explained there was just way too much activity in too many places to safely go in and remove anything without causing more damage and cognitive deficit. So the door is closed on that option for her for now.

BUT, in better news.. she does believe Jemma is a candidate for a Vagus Nerve Stimulator(VNS) implant. She plans to expedite the process for this surgery and hopefully get one in Jemma in about a month. It would be implanted int her right chest and has a wire that wraps around the vagus nerve. It works by detecting a change in heart rate that happens just before her seizures and sending an electric pulse to the vagus nerve that would interrupt the seizure and stop it. It may take time to fine-tune it for her, but we’ve heard of great success with this treatment too so we are still hanging on to hope that this is what is meant for her at this time and it’s coming to this instead of resection for a reason. We’ve prayed for the best thing possible for her and are trusting that God’s leading the way to that, whatever it is.

Therapy at AbilityKC will be delayed for now, she was supposed to start next week but with getting loaded back up on new medications, it would not be in her best interest to start an intensive therapy program while she’s miserable and not herself. We’re disappointed in this too because we were so excited for her to get to work on therapy, especially speech/communication.

Tonight they started Jemma back on her usual medications, but added 3 more. So she’ll be going home on 6 total. She has steroid antibiotic ear drops for the drainage she’s developed around her ear tubes recently. Then treatment for the Epileptic Spasms relapse includes a burst of high dose steroids for 4 weeks, at the same time as she will titrate over a couple weeks up to full dose of the Vigabatrin medication she had previously been on for a year. We love/hate this one. It definitely works, but has more side effects that slow her down in coordination, speech and general brain function and can cause vision loss with retinal damage over time. So, she will see ophthalmology here periodically again to monitor that. She will also see her pediatrician once every week while on the steroids to make sure her blood sugar and weight stay in a safe zone and she can tolerate it. Prilosec, to prevent stomach ulcers from the steroids. Steroids will also lower her immune system function again so we’ll have to be more careful around illness too, cue the mom anxiety about this especially since her siblings school starts next month.🤪😅

Neurosurgery consult consult hopefully in the next couple of weeks to talk about VNS with the surgeon, go home to ‘roid rage it out and get these seizures under control again hopefully, and anxiously await implant date. Help us pray that it can work! That she can get off these drugs! All the doctors have agreed that no kid should have to live on this many drugs if there’s a better option, and we need VNS to do that for her. We want our lively, energetic girl to keep marching FORWARD into getting a better quality of life instead of taking so many steps back, which is exactly how this week has felt.. like such a setback.

The best news is that tomorrow we go home!! We’re so ready, we miss our kids and our beds and even our silly dog, lol. Thank you for taking the time to read Jemma’s rollercoaster of life updates as they come and continuing to care so much about her, please know we see every share and read every comment and we appreciate your support so much! 💜🎗️

on

07/17/2025

SPECT day 3. Jemma had a long day today. She was having seizures at night and throughout the day. They caught one with left side involvement and did the scan. While she was under sedation they worked on getting more labs for genetics, but her veins kept blowing so they had to start a new IV because that failed also. They tried 6 times even with ultrasound, that’s a new problem we don’t see very often with her. But they eventually got it. Scan went well after that and will have results hopefully tomorrow or Friday.

She had to have an e***a, poor thing hadn’t had a dirty diaper since Friday last week and they already tried an oral laxative and a suppository. Afterwards she had some electrolyte imbalance symptoms for a few hours but regulated again after giving more water through GTube and resting.

She’s having really high heart rates while she’s having seizures, between 160-180. Oxygens dropping to 84-88. She had a lot of seizures today being off the medication so she was exhausted again by the end of today. Hopefully tomorrow we can get a right side focal seizure captured and a game plan for moving forward with the new spasms finding and get the seizures under control again with meds before going home, thank you for praying!

Jemma’s Journey

08/21/2025

08/21/2025

08/02/2025

08/01/2025

07/31/2025

07/30/2025

07/29/2025

07/28/2025

07/23/2025

07/19/2025

07/18/2025

07/17/2025

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