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Jemma’s Journey, Sublette, KS (2026)

05/01/2026

A quick update & a few thoughts! 💛

Read to the end! 😉

Jemma is still having seizures, 2-4 a week for the last 3 weeks. The good thing is the VNS is working after 2-3 swipes and she is not needing the oral rescue medicine. She has had a viral cold she just can’t kick, and we know that even a runny nose and cough for Jemma always means more seizures. We will increase the settings of her VNS in Kc later this month. I’m communicating with her neurologist but with a whole new patient portal system to navigate it’s been an adjustment to get through to them.

Jemma is doing pretty good overall given the circumstances, a few gains in verbal communication, she’s doing really good in physical therapy, she used to have low endurance with Kilah but has just blossomed with her in the last year! Now she loves to go see “Diyah!”. We tried taking her to a local OT again, but after a few visits the therapist let me know that because Jemma wasn’t able to follow her instructions or handle more than a few minutes of work with her weak hand because of the sensitivity in it, she said she didn’t think she could help Jemma anymore and that she believed Jemma needs sensory input therapy and ABA (Applied Behavioral Therapy) in order to have occupational therapy be successful. This isn’t wrong, but that sort of therapy is 4-6 hours away and only with a specific diagnosis of Autism, that Jemma does not have yet. She said we should move.🤪 In my opinion, it takes a specific type of person to be able to work with kids like Jemma, and she just doesn’t have it. Jemma CAN do OT with someone that’s patient and kind and meets her where she is. So I’ve taken that on and working with her at home for now, until we find someone else.

In terms of behavior, Jemma is somewhat struggling. She has good days too, but she gets easily overwhelmed and frustrated, especially with other small kids around her age. She will impulsively hurt others and it’s exhausting for her and us. We know she’s spent the majority of her life with adults, her parents, therapists, nurses, all people that are there to help her and are aware of her differences and where she needs extra help. She’s not really been able to have free play with kids for almost her whole life and it’s new to her. I know there is some frustration that she knows she can’t do things the way others can, but really.. we can’t figure out what her triggers are, so I’ve submitted the evaluation forms to the developmental & behavioral clinic at Children’s Mercy. The waitlist is 6-8 months just for an evaluation. I’ve called around other places in the state and they’re all the same wait times.

Jemma went to her first preschool round-up day at school! She did pretty good at the beginning, sat on my lap and listened to a story and did pretty good with the other kids at first. She roamed the classroom to make sure it was up to her inspection, and it was full of fun things she loves. She did some dancing with the group, but I could tell she was starting to wear out and getting too close for comfort for the other kids. I had to intervene with every interaction to prevent her from pushing or pulling on the others. I had already delayed her morning meds to give her a chance to be out of the fog for the morning, but she was still getting drowsy, aggressive and impulsive, I tried all I could to keep her calm beforehand and during, so when it came time for recess we were both ready to go outside. When we came out Jemma ran around a bit and she saw the others on tricycles and I could tell this would frustrate her and it did. She loves to ride in the bike trailer at home and has shown interest in her siblings bikes too, but because of her cerebral palsy, she doesn’t have the balance, coordination, or any control of her left hand to be able to ride at all safely.

So I looked for the one thing she loves that I know she can do, the swing. The only equipment they have for disabled students, that Jemma can safely access and loves, was not available, it had blown up in the wind and was wrapped around the frame, out of anyone’s reach to get down.. and I just lost it. The one thing I was looking forward to giving her a chance to join the play independently, the sensory relief I knew it would give her right when she really needed it, and it was not available. I couldn’t hold back the flood of tears.

Grief has worked funny this way through the years since her diagnosis. I can stay focused on giving her the best care and support I know how, and stay as positive as possible, and then something like this happens and it just strikes without warning and my heart breaks again. I can handle the stares, other people’s discomfort and tip-toeing around her, I can handle my own disappointment in the expectations I had of this life. But when I saw this, I felt so defeated and angry for her.

But I reined it in, just enough to pivot. I decided I would figure out a way to use this feeling to fuel myself and make a way for her. We went to the next thing I knew Jemma could do with my help, the small playground slides. She made it a few rounds before she was frustrated and too tired to play anymore, we went back inside and I gave her medicine in the classroom and I took her home for a nap.

I was anxious before this day and I had prayed about it going into it, but something about being in the classroom with a group of kids Jemma’s age that are so much more socially advanced, independent and able, broke my heart for my girl. Our community is small, I recognize this. But accessibility at school is not negotiable, especially for children that have fought so hard just to be alive.

I do my best to see the bright side most of the time, but this time is just kind of all hit me at once how far behind she is, and how much I long for her life and her childhood to be full of fun and life, that she wouldn’t have to struggle so much just to get to be on the playing field with her peers the way she wants to be.

Every child deserves the joy of play.

Since then, I’ve been communicating with the school administrators and they are working on ways to get better equipment and a behavior plan in her IEP to get things on the right track for progress. I’m truly so grateful that they have been open to listen to my thoughts, and eager to learn and do things better. This is a good community, with good people. We know that we will need to help people understand how to interact with Jemma, and I will never shy away from a conversation about how to communicate and understand her, when people just ask and not assume.

If you’ve taken the time to read all of this, thank you. I appreciate it so much, I believe in being open and honest about our experience and her needs. So many of you have asked through the years how to help and I’ve sometimes not known what to say. Prayer is first always, and of the greatest blessing to us! But if you feel called to help us in this, please consider donating even a little to our school project to help with accessible equipment for Jemma and more children in our community with disabilities that deserve to play too, it would mean the world to us! I’ll post the link in the comments. We never stop feeling grateful, that we got to keep her, that we get to love her and see her grow and just be a kid!🎗️🎗️🎗️🎗️💚💚💜💜💛💛

04/09/2026

Jemma’s contagious laugh is just too good not to share! 🥹✨❤️

04/09/2026

An update on Jemma!

She healed very well from her ear patch surgery! She had almost immediate relief from the smelly pus and drainage, she’s even picked up a few more words since! It’s hard to tell if it’s from surgery or just a growth spurt but I do wonder if these things could be related. It was a struggle to keep her ears dry for the first few weeks but we adjusted after a while and with her cute new haircut it made it much easier!

I was able to find an amazing and super patient local stylist that offered to come into our home and cut Jemma’s hair for her. She was so kind and and it meant so much to me as a mom for her to be so understanding and willing to meet Jemma where she is. ♥️ She cannot sit still and gets overwhelmed easily by haircuts, the feeling of prickly hair on her skin, the constant touching and people in her space. She doesn’t comprehend the reason for a haircut yet and it’s a stressful experience for us all so I’d been putting it off, since she has had so much medical trauma around her head/hair/face, she hates anything in her hair and fights to yank and pull it out, Jemma will be rocking the bangs+bob combo again for a while!

For spring break we took a trip to Utah and Colorado for a full week to explore Moab, Telluride, Ouray, and the million dollar highway to Silverton, then to the Royal Gorge in Cañon City. It was a long trip but the kids did so well! It was a beautiful area with a lot of great look out points and there were even a few trails that were accessible by packed hard gravel and we were able to get to with Jemma’s wagon so she got to experience it too! The older two and Jerry even jumped off the edge of a cliff on a rope swing while me and Jemma watched from a little cave to keep out of the heat.

The most pressing issue Jemma is still battling is her Epilepsy. She’s still having seizures somewhat frequently now. Her epileptologist had us try a bridge of a medication over 3 days to see if she would respond, and she did thankfully. No seizures or spasms during the bridge, so he suspects seizures more than spasms. I hope and wish this would be true. So, she is not on any steroids yet. He increased medications again to match her weight and will adjust her VNS settings the next time we’re in KC in May. She cannot stay on the bridge medication unfortunately because it’s way too sedating and has more side effects since it’s technically a rescue drug. She already has to sleep her current meds off every day for hours to feel better by the afternoon so we can’t afford to sedate her more.

Our house has also been hit with illness that we just can’t kick for the last 5-6 weeks, including Jemma. We noticed an increase in seizures as soon as she started feeling sick. This tells us her epilepsy really is only barely under control on a good day. Please pray that she can stay out of the hospital while the viruses make their way through the house and that we can all just get well again soon. Jemma getting sick means something totally different than it does for her siblings, and we try our best to protect her but we want her to experience life outside of a bubble and illness is a risk that comes with that. We’re just weary and feel wrung out. Thank you for thinking of her and for all your prayers, they are felt and appreciated. ♥️

03/13/2026

JEMMA IS FOUR! ✨💐🫶🏻🥳🎈🎉

We celebrated our special girl yesterday with all her closest family. She is so loved and we are SO blessed to have had 4 years with her. We pray to have many more years to watch her grow up and spread joy the way only she does. ✨

03/05/2026

An update on our girl!💔

Last month, after Jemma’s epilepsy appointment the day after her ear tube removal surgery we talked about her continuing focal seizures and her doctor increased the doses of 2 of her medications to match her weight gain/growth. We also discussed different treatment options and asked his opinion of possibly taking Jemma to Panama for stem cell treatments. He told us that he knows about it, but because it’s not FDA approved in the US yet, couldn’t recommend it for Jemma. He said another patient of his has done it and the family claimed it was amazing and had great results, but in his opinion he did not see benefit clinically. He is a very data oriented and evidence-driven doctor, so to him, if there is not enough data, it’s not worth it. The cost is an out of pocket 25k+ for ONE treatment of Mesenchymal cells. He compared it to physical therapy being more effective than chiropractic care. We disagree, which is okay, because we know that natural medicine and western medicine can coexist and both be beneficial. We’re still thinking and praying about this.

Fast-forward to two days ago, Monday I noticed Jemma had another seizure episode that I suspected could be epileptic spasms. I recorded it, called the epilpesy center in KC and let her team know. They called back and told me the doctor would call me. 24 hours later, he calls and I explain her symptoms to him. He tells me that it is likely another relapse. She’s on full doses of every medication and it is not working. Jemma will need to go in for a set of labs, a urinalysis, and start steroids again for 4 weeks. Today, she had 2 clusters of spasms that I caught. She’s likely having more during sleep. This means that her brain is having a disorganized pattern at baseline for a long period of time and the spasms are the evidence of this. The VNS isn’t working for this. She’s now having two seizure types happening daily. Spasms are detrimental for brain development and are technically a medical emergency, requiring treatment immediately. Jemma went untreated for 10 months last year. This time, it only took 6 months before this relapse with full medication, which has NOT happened before. This medication has always worked before. Her doctor has still not called back for more instructions. He is supposed to be one of the best epileptologists in the area. I’m angry and disappointed. Jemma is meeting criteria for Lennox-Gastaux syndrome, which is incurable and treatment-resistant. I want better for her, but feel like we are hitting a dead end everywhere. Steroids were absolutely horrible last time.. immunosuppression, rage, weight gain, extreme fussiness and gastrointestinal issues are just some of the side effects. She was hospitalized for a bowel cleanout last time during this treatment. It works, but at a cost. It’s over a month of misery for her and us. Months to recover. We’re tired. We want her healthy. Please pray for a way, a miracle, something that can work and for more time that doesn’t cause more complications. Pray that we can have peace and make the best decisions possible for her. Thank you!

02/10/2026

Ear tubes are out!! Finally! These pesky tubes have been nothing but trouble since day 1, and after the last 8 months of drainage, terrible smell and discomfort for Jemma we are glad to be rid of them. The surgeon said her tubes were both totally grown shut with granulomas and definitely needed to come out. He placed a small paper patch on the holes in her ear drum to keep bacteria out and help them heal on their own. There is 90% chance that her ears will heal now without leaving a perforation or causing any hearing loss, the hearing test they did during surgery showed that her hearing is normal! So the blockage from the granulation tissue was preventing them from a good read last time. It is possible if the ear doesn’t heal that she’ll have another surgery to fix that, but that should be rare. We pray that this will just heal and we’ll be done with ear issues from now on. Sedation went very well! She’s had no nausea this time and woke up in a good mood.

Tomorrow we see her Epilepsy specialist and will talk about what to do next, she had another seizure yesterday evening in the car. They seem to be happening more during naps and sleep, she woke up and immediately went into seizure, this is common in epilepsy because during the sleep/wake period the brain is more susceptible to misfires. I have a lot of questions for him and am anxious for this appointment and what he’ll want to do.

Thank you all for praying for Jemma! We appreciate it so much! ❤️

01/22/2026

A long over due update on our Jemma girl!

Last week Thursday, Aunt Jenny and Mama drove up to KC for a packed appointment day on Friday. Jemma had a rough night at the Ronald McDonald house this time, we only went to sleep at 10ish pm, but she woke up at 4 am to sneak into and rummage through the bathroom to throw every thing within reach into the toilet. 🙈 She fully believed it to be morning and could not understand why we didn’t also believe that. So we were out and caffeinated by 8 am. By that time and with the sedation of her meds, Jemma was snoozing away just in time for her appointment at Ability KC.

Jemma’s speech device had arrived the week before and we were excited to get to Ability to have the teach us and her how to use it, what words to add/remove and customize the voice to Jemma. She slept through the entirety of the appointment but it turned out okay as it was mostly a training for me as her parent/caretaker/therapist/assistant, lol. I learned a lot and I’m so happy and relieved to have a tool that can help her communicate to us better. It will take time and work but with speech therapy and practice I think this is a huge blessing to have.

By 10:30 we rushed back to CMH downtown for her next appointments, first was ENT. Jemma has had more drainage out of her left ear now, previously it was her right ear. Her ear tubes are growing granulomas on the tubes, trying to push them out but can’t. She has steroid/antibiotic drops for the next ten days again. We are more than ready for February 10th to get here for surgery to get these pestering tubes out!

After that, we hopped over to the neurology nurse appointment, where we waited and waited and then waited more, Jemma needed a VNS increase again. They’ve also increased medication and finally scheduled a follow up with her primary epileptologist. The hospital has lost 3 providers in the last year and are shorter staffed than before making it even more hard to communicate and advocate lately. I scheduled this appointment knowing that even if we couldn’t see the doctor to get things done, the nurse would pull us through and she totally did. I don’t love doing this, but I’ve learned sometimes you have to physically be in front of someone to get stuff done without being delayed. She listened intently, then hunted him down and called and called and changed the VNS settings for Jemma, scheduled everything that had been dropped but we needed and worked hard for over an hour for us. I wanted to hug her! Jemma has another in person visit with her primary finally, and should be getting an EEG soon after. I thanked her so much and we made it out to get lunch and make it to the Overland Park CMH clinic by 2 pm.

At the Rehab appointment Jemma received one Botox shot into the pronator teres muscle in her forearm. This is because of the way she carried her left arm and how much she turns it in, by relaxing this muscle she should be able to turn her palm up and hold things more easily. It should take effect in about a week and then last for 3-4 months. So it’s not permanent but will be a good trial period to see if she will benefit from it. She will be doing more OT twice a week for this time to hopefully have the most improvement possible!

Then we made the long haul back home completely exhausted from the lack of sleep and a car version of “cabin fever”. We all felt a little sick coming home, but we made it by 10 pm. A crazy 24 hours, but so productive and worth it!

On another note, Jemma is having more seizures again. She had one moderate seizure in November. Then one severe seizure in December where we had to give rescue medicine and even called 911 while in Colorado fo family vacation. She did not need to go into the hospital because the rescue took effect and it would have resulted in unnecessary medical trauma and testing for her and being out of state without her usual team that already knows her. But it was terrifying for everyone that hadn’t seen it before, I never wish for people to have to witness these more severe seizures, but it helps so much for people to understand her. To care more to protect her. In short, Jemma turned totally grey in the face, her lips turned blue and she was totally unresponsive. Like she just suddenly dropped dead for almost 5 whole minutes. This is the worst one we’ve seen so far. With 3 maxed meds and a VNS this shouldn’t happen. I’m anxious to see what her next EEG will show, and discuss with her doctor again in person to do something. These seizures are what make the chances of sudden epileptic death seem so much more real. Like we know it could happen but when she goes a while without one, we start to feel secure and more at peace, then in a moment it’s gone. The uncertainty is back, the terror comes back and the reality of how fragile life is at any time when we may least suspect it, is back. We’re grateful for her and for every time the seizure ends and she comes back. ❤️ We just pray it can be every time.

I will post a more mild seizure video in the comments if the post will allow it, I can’t add videos and pictures together to posts for some reason. The severe seizure I will add screenshots of into the post- the video is full of panic from everyone and too hard to watch otherwise. We are told to always record for her neurologist to review later, videos help diagnose so much.

Thank you for continuing to pray and support us, it’s been a long journey with a lot of ups and downs and may be this way for a long time. But please know we appreciate and read all your comments and thoughts and most of all your prayers. Even when we don’t know what to do, we can appeal to the God that does know, and trust that no matter what, His plans are to prosper her and give her a good future- full of hope and goodness and peace, and we’re just holding onto that. ❤️

12/09/2025

Jemma’s scans are cancer-FREE! She has no tumor, no hydrocephalus or shunt malfunction. 🙌🏻 All is as it should be and is her baseline. Her scan is still very abnormal compared to an uninjured brain, and looking at her results without knowing Jemma, doctors are shocked at her abilities every time. 1/3 of her brain is still missing or filled with scar tissue.
Sedation went well, she went right to sleep and woke up happy. After she had some zofran and an hour or so to wake up fully, we took a little trip to the mall and target to shop for Christmas gifts, then to a steakhouse for dinner!

This morning we had to make a stop for a neurologsit here in wichita to turn off her Vagal Nerve Stimulator before she could have her MRI, along with other precautions the hospital does with the machine in order for her to have a safe scan. So, tomorrow we will stop by again for them to turn her VNS implant back on and be programmed to her again. Then we will head home! Thank you so much for your prayers! We know God listens to us and He has fought for our girl and healed her. ❤️

Everywhere we go with Jemma, her story is somehow shared in one way or another.. When in target the woman at the checkout asked me if Jemma has special needs, at first I was a little shocked/surprised.. but I just told her Jemma’s story and explained why she looks, talks and walks differently than a typical kid. She listened and tears filled her eyes as she just looked at Jemma again with fresh eyes once she understood what an absolute MIRACLE she is. The baby that was dying, that they told us might never talk, walk, or eat on her own, can do all of that now. But even if she couldn’t, we would love her regardless and still be SO PROUD of her and all that she is. She brings so much joy to every person that crosses her path. She makes sure everyone knows they are seen by her and will hear her tell them HI! As she is growing up I know that her differences will only become more obvious, I just pray that people will not judge her by what makes her different but start a conversation and ask more about her, to try to understand and have grace for her. She is such blessing to us and to the world. I love when I get a chance to share her story and let people know what our God did and that there is no other explanation for her progress than Him. ✨🎗️💕

12/05/2025

This week on Tuesday and Wednesday Jemma had appointments in KC with ENT and Ophthalmology.

Jemma finished her 5th round of steriod+antibiotic ear drops after 14 days last week, so this week the surgeon came in to check her tubes under a microscope. She had to put on a papoose board to do this. This is similar to a mini stretcher with velcro restraints across her whole body to keep her still enough to look safely, Jemma wasn’t a fan of this at all. Without sedation there’s not a better way and it was quick, so it’s not worth the risks of sedating her again, but she was okay after a few minutes of singing songs and playing with the light spinner. The surgeon saw almost right away that her right ear tube is completely covered in granulation tissue so it would not be able to come out on its own, the way it should. Because she’s had so many infections this year, he recommended that she have them surgically removed and patched. They’re scheduling surgery for sometime in January.

Because of Etoposide, one of the Chemo drugs Jemma had to have during treatment can cause hearing loss, she has to have hearing tests periodically. So after ENT she headed to the sound booth for this and she passed well on her left ear, but the audiologist couldn’t get a good read of her right ear. This could be because of the blockage in the tube, so they’ve ordered another hearing test to be done at the same time as surgery so she only needs sedated one time. This is called an ABR (Auditory Brainstem Response) Test. This will see how the hearing nerve and brain pathway responds to sounds. The right side of her brain is also where the tumor was resected and could be causing the hearing loss, so we want to rule that out.

Then at Ophthalmology, they dilated her eyes and checked her retinas to see if the epilepsy medication she’s on has affected her vision yet. There’s a 40% chance that the medication will cause permanent peripheral vision loss. We hate this statistic but the benefit of this med outweigh this risk right now. It’s the only treatment for the Epileptic Spasms so seizure control and her brain function is more important than the potential for partial vision loss. The doctor did say that her Cortical Visual Impairment diagnosis is still the reason Jemma sometimes bumps into things on her left and needs to be reminded to be aware of her left side often. We’re just glad that her retinas are still healthy, and they’ll check again in 6 months.

Next week Monday the 8th, Jemma has her follow-up scan with Oncology. The days/weeks leading up to this scan are always full of anxiety for us. Jemma’s been cancer-free for 3 years now! We want her to stay that way. A lot of memories come back at this time as we remember what treatment was like and the fear of cancer coming back is heavy. Please help us pray that scans will go well and she will have no complications, and no cancer!🎗️

11/12/2025

Jemma has had a few sweet restful weeks at home getting back to routine again! She’s had a lot of telehealth video appointments for follow ups and that’s been much more convenient for us.

Jemma unfortunately had another breakthrough seizure on Friday last week. This one was more intense and longer than any she has ever had before at home. She stopped breathing and turned dusky and grey in her face and her lips/mouth were completely blue. Lasting 4-5 minutes. Honestly I was terrified and almost called 911. I ran her magnet over the VNS twice and it finally stopped right when I was about to call. I was warned this could happen with her epilepsy. Her neurologist said when her seizures were more medicated/“controlled” she could either have seizures that were more frequent but less intense OR they would be less frequent but much more intense. Jemma seems to be in the more intense/less frequent category. They’ve increased her meds again and are going to give us a nasal rescue medication as well as the cheek tablets we already have. He also recommended we both get CPR certified, so we will be doing that soon too.

I plan to look into some other options for seizures now too, there has to be something out there that works and works better than this. Her epilepsy is drug-resistant and now that she’s having longer seizures that are stopping her breathing it increases the chances of SUDEP (Sudden Unexpected Death in Epilepsy). So we’ve got to do more to prevent this and have less intense seizures at least, but strive for NO seizures eventually. Somehow. It feels like were going to need a miracle. God’s done it before, we pray He will do it again with this. We want to keep her, and give her the best life possible, without seizures and so many meds.

We did go up to KC for a ENT follow up on her ears and they were not able to find her tubes in her right ear because it’s covered in granulation tissue. This isn’t very common and we’re not sure why it happened, but it explains why she has drainage. So she’s on a steroid and antibiotic drop for 14 days this time. Hopefully this will reduce the inflammation and tissue so that they will be able to either see the tube or if there is a perforation under the tissue, if there is a perforation then she will need surgery to patch and repair it. She has an appointment again December 2nd to check again.

She also has more feeding/speech appointments coming up to help her learn to bite off foods better. We’re still cutting food into small pieces so that she can more easily eat but she needs to eventually learn to bite off things and chew more thoroughly. She will stuff her mouth like a chipmunk too and then struggle to chew and swallow it down without choking so we’re going to start again with feeding therapy in KC.

Thank you all for praying for Jemma! We appreciate it so much! 🫶🏻💜

th

Jemma’s Journey

05/01/2026

04/09/2026

04/09/2026

03/13/2026

03/05/2026

02/10/2026

01/22/2026

12/09/2025

12/05/2025

11/12/2025

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