1/13 update:
Hellllooo Knoblauch support system
We made the Mayo trip! We left early, beat the storms up and spent the week doing tests, meeting doctors, and making Plan A,B, and C.
Our final meeting with the doctor is early next week, but we were able to get a general idea from our initial visit.
Everett had an MRI (full brain) that didn’t show any specific areas of concern, and thankfully did not show any new damage or concerns from this last seizure episode. This also means there isn’t one little area that can be removed to stop the seizures.
His EEG still showed daytime “sparks” but no actual seizures. His nighttime “sparks” have decreased from 95% to 60%. Even though it’s worth celebrating the decrease in sparks, we are told that having any percentage can still cause cognitive decline.
Mayo also confirmed that he has sparks coming from all over both sides of his brain at random, which could make surgery options limited. The true data they need to collect is exactly where clinical seizures come from, one area or several areas. To do that, they have to cause him to have seizures
We all agree he is not stable enough to attempt this right now, and we need to try other methods first.
Although I’ve had some frustrations with CMH, Mayo seems to align their view with CMH current plan with some tweaks.
We have toyed with mainly two options- keto diet or VNS implant.
Unfortunately, Everett’s last seizure escapade forced our hand into a g-tube for meds and nutrition. This makes trying Keto a more realistic possibility for success. Not every kid responds to keto, but he has a 50% chance
this could reduce his seizures by 75%, hopefully taking off some of these awful drugs and bringing back some of the personality we’ve lost.
I’m worried doing this will completely lose his drive to eat by mouth, but maybe that’s the cost we have to pay.
Keto requires close monitoring of labs and follow up because it can be damaging to your body. This requires Everett to go inpatient again for about a week then frequent follow up So Mayo would like us to do this closer to home.
If this doesn’t show any success in 6 months, then back to the drawing board for potential surgeries or Med changes.
Thanks everyone who follows our journey each step of the way by sending prayers, offering up help with meals, gift cards, donations, household chores, mental health check ins, and so much more
Please pray as we wean down on one of E‘s STRONG seizure meds, that we do not see any seizures, but that we see Everett regain some cognition, vision, and drive to regain lost skills
Please pray that Keto is the answer his brain needs to re-wire and stop this awful disease
Please pray for our family continues to find understanding in Gods plan and that He will provide the strength and support to keep us moving forward and fighting for our little Everett.
P.S. Alaina had the best vacation with mommy daddy and Everett at Hotel Ronald McDonald
12/20:
HOME ❤️
12/17 update:
Hey all,
Whirlwind of a weekend.
Last minute changes to our plans going home last week.
Unfortunately E is not doing great with relearning skills to swallow and eat. For several months Ryan and I have been contemplating how to best get medications down when he doesn’t feel good or refuses to take his seizure meds. Now that he isn’t eating or drinking, they have to give him everything through a tube they put into his nose down to his stomach..
If anyone of you truly know Everett, you know the hell he’s raising about keeping a tube in his nose, taped to his face..
So we decided to stay a few more days so the team could schedule him for surgery to have a tube inserted into straight into his belly to give us a way to nourish him, and give him meds.
These recent decisions heavily way on us so please keep praying for our family. Prayers God will continue to guide us towards the right path, and prayers for healing of Everett’s mind and body, as well as our own.
Please send prayers for Everett during surgery on Tuesday; For the medical team that touches him that day and during his recovery.
And please pray that we will come home before Christmas !
12/10 update:
Hopefully E is in the final stretch of this hospitalization!
We have been in the inpatient rehab, going on his 3rd week and we are seeing little bits of progress every day.
This week will be full of big decisions so that he is safe to come home.
Please keep us in your prayers for strength and guidance on the next decisions we make.
Admission Date: October 23rd
Tentative home date: December 15th
Update from Chelsee 11/15:
“Today was filled with ups and downs. But it’s the first day in about 3 weeks that I’ve even felt a sliver of something other than constant worry.
Still nowhere near his baseline, Everett gave us a few smiles, and loud babbles! We were relieved
to see some activity today!
Unfortunately, we also saw seizures. Enough to give him a big dose of meds to knock out the seizures, and him as well. This medication did its job of keeping him from going back into a constant state of seizures, but it also causes him to SLEEP.
We are adding on another medicine to his regimen, and will have to watch this one carefully as it can cause some side effects with one of the other meds he’s already taking. We are no longer hopeful that the seizures will be gone, but that they are less frequent and he is able to have some quality of life. They are hopeful this combination will keep the seizures to a more tolerable amount.
Please keep praying hard! These next few weeks are crucial. We are also facing several different paths of where to go next; ie if he should have some rehabilitation (relearning to eat, sit up, use his arms and legs again), if our family can take on longer distances and burdens on others to give him what he needs. Please pray God would make these paths clear to us.
As always, thanks for your support, prayers, and love for our family!“
Everett came into this world at 27 weeks gestation on April 8th, 2019. Due to his prematurity, Everett has dealt with many medical issues. He had a brain bleed early in his life that has lead to many complications, including a VP shunt, Cerebral Palsy (CP), Seizures and Epilepsy. Throughout his life, there have been numerous trips to KC for doctor appointments and hospital stays, surgeries, as well as many physical and occupational therapy visits.
Despite all of these setbacks in his life, Everett was starting to thrive. His seizures were under control, he could count to one hundred, say his ABCs forward and backwards, and talk to us in phrases that those close to him could understand. Physically he could crawl, sit up, pull to stand, and had begun to walk with assistance. In March, Everett underwent a surgery to help alleviate some of his CP symptoms. He worked hard all summer, and had even attempted to take steps and start walking independently. He is a happy go-lucky kid, whose smile could melt your heart, and his laugh can bring you warmth.
This year, Everett’s seizures were starting to become more frequent, but were manageable through monitoring and medication. In September, Everett had an outpatient procedure to remove his tonsils. Recovery was expected to take a week or two for him to pop back to his normal self. However, he never fully recovered. After noticing declines in his functional abilities, Ryan & Chelsee took him to Children’s Mercy in KC in mid-September. After a week in the hospital, the Epilepsy team felt the seizures were under control, and Everett went home. A few days later, Everett’s seizures reappeared, and they returned to KC. During this visit, the doctors discovered that his brain shunt had malfunctioned and required a surgery to be revised.
There was a sense of relief that the issue had been found, and that he would recover. They were sent home again, only to see him not improve over the next several weeks, and they returned to the hospital on October 23rd. At that point, Everett was having continual seizures most hours of the day. Everett was placed in a medically induced coma to help heal and reset brain activity. After gradually coming out of his coma, his seizures were noticeably increasing once again, so he was placed back in the coma. Currently, Everett remains hospitalized at Children’s Mercy of Kansas City. The long-term plans are unknown, but the doctors are acting fast to help get the seizures under control with close medical attention, medication changes, and most importantly lots and lots of prayers for his recovery. Ryan and Chelsee have plans to make a trip to Mayo Clinic in Minnesota, in January 2024, for Everett to see some of the best specialists, and determine what is best for him.
Chelsee and Ryan have made numerous 3+ hour road trips to transport Everett. They have coordinated care with family and friends for Everett’s younger sister, Alaina, and their pets, all while managing their full time jobs and household…. and trying to have some sense of normalcy.
Many have asked what you can do to help.
Everett, Ryan and Chelsee most importantly need your continued prayers to grant them the strength to accept God’s will, to accept what lies ahead for them all. We ask God to stand by them and to help them be comforted knowing his presence in all situations.
For those who wish to do more, we have established a 501 3(c) fund to help with their travel expenses (airline tickets, hotels, meals, gas), open ended medical costs, special needs childcare costs and expenses associated with numerous visits to specialists to provide Everett with the care he needs out of necessity.
From the bottom of our hearts, thank you for anything you can do to support our sweet Everett and his family.
