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. ❤️
