It’s been a minute, tell me how you’re healin’

‘Cause I’m about to get into my feelings

Time for a long overdue update! I thought about writing many times but I’ll be honest, it doesn’t feel great to sit down and try to figure out a way to package up “day 234, things continue to be terrible”. Also, my love language is funny and my humor has been too acerbic for many lately. I’m aging like a cheese, not a wine.. and never a whine. Like most people I know, we’ve been in survival mode in many ways.  

When I last posted, we were in Texas and had just heard the plan going forward. I ended by saying we were holding on until the third week of August and that is just what we did. Maybe by the skin of our teeth (yeesh, I’ve always been grossed out by that expression but it is accurate), but we’re here.

Noteworthy things: March: I turned 39 while we were in Texas. I’m not 40 yet but I do feel like the cryptkeeper. They say you’re only as old as you feel, and some days baby, I’m barely breathing. No worries, dear readers: I consume so much caffeine that I think it would take at least 3 days for my body to stop moving if I were to give up the ghost. In regards to aging, see my previous comment about aging like cheese as opposed to wine. I am definitely getting stronger and saltier with age. I’d say if I were a cheese, I’m probably a good strong parm. I do, however, not smell like feet. 

May:  Max turned 9! His birthday fell on Mother’s Day this year. It’s always a little extra special when that happens since he’s the one who made me a mama. We had a low key birthday weekend with lego building and hiking in the woods on Saturday. We were having a lot of breakthrough seizures. One of my and Matt’s goals is always balance. The seizures are always there, so it’s a matter of making sure we’re prepped and ready but still try to give Max and Frankie the closest  to normalcy as we can. We still do the things, we just engage in a lot of risk management and are ready for an inevitable plot twist caused by a seizure, recovery, or side effects of meds. At this point because  we were having a lot of  breakthrough seizures  Max was having to miss a lot of school. We’re always in regular communication with his local team- perhaps too much for their liking?. We don’t belong to Texas at this point, so it’s frustrating because it’s a lot of troubleshooting and throwing it against the wall and seeing what sticks with medications. Max got a high fever for his actual birthday. His mood was great but he was very fatigued. Oddly enough, high fevers tend to make the seizures stop for Max and a handful of other kiddos from the epilepsy groups I am in. We had a low key day at home for Mother’s Day/ his birthday.  We got Max an ax throwing game and he and Frankie threw some axes and we took it easy with pizza and cake. 

That became the theme for the summer: taking it easy. I am used to being on the go all the time. I joke that I am like a shark and have to stay moving or I will die. Kidding aside, that’s how I cope best with anxiety: by being busy. I funnel my energy towards research and finding out next steps that I think might work for us if the next thing fails. I’ve become somewhat of a doomsday prepper: plan for the worst and hope for the best while skeptically side-eyeing everything. 

 As a refresher: Meds don’t really work for Max. He has intractable seizures, or they work for a brief honeymoon period and then fail. Sometimes, they fail tremendously and quickly. Other times they kind of work at suppressing seizures but the side effects are devastating to his quality of life. The drugs used to treat seizures are often part of the same “families” so we know if one didn’t work, then it often eliminates many others.  He is part of the ⅓ who medications do not work for.  It’s a matter of waiting for research into gene sequencing and epilepsy research to catch up to the need. In the meantime, our best option towards lightening Max’s seizure load is surgery.  The approach has been to just keep adjusting and changing medication combos to use up the honeymoon periods on med combos to get us to August. It’s like living in a poorly controlled science experiment.  We monitor seizure load, keep notes on side effects and advocate for changes and adjustment when things aren’t working (read become polite but persistent pains in the ass to his team).

June: Frankie turned 5! She was very excited to turn “a whole hand” . We celebrated at home with presents, hot dogs on the bonfire, s’mores, and swimming in the stock tank pool. She declared it   “ the best day of my life, pretty much”.  I would be remiss to not mention what an incredible kid our Frankie is. We try really hard to make it so epilepsy doesn’t consume everything in our house but the fact is that it’s always circling like a shark.  Even when you think you’re swimming safely in the kiddie pool, up pops a fin! Epilepsy is like that old landshark skit on SNL, only not  as funny. Even when you’re doing everything you can to offset it.. Knock, knock..   All that to say,  Frankie is the BEST little sister. Seizures show up to all the parties, even though it’s never invited. She is as brave and strong as Max is. She is as good at spotting subtle seizures as I am and will yell for us if needed. She wants to be right there to ask Max questions to gauge lucidity- to see if a seizure has ended or not. It makes me sad that this is our reality and that they have to be so resilient. But, I am also so humbled by what a strong, brave, compassionate, kind, and empathetic person she is. She is intuitive and looks out for him. She never once has complained when epilepsy has changed our plans. We try to offset things by making sure both Frankie and Max get solo time and we get them out to do things by themselves. However, they then just want to know what the other half of our squad is doing and get the band back together.  We don’t love how pervasive Max’s epilepsy is. It has become pretty apparent how much it has affected things recently, but I do have to say that our kids amaze us every day with how well they adapt to the struggles that come along with the unpredictability of the seizures. They both have every right to complain but don’t. They seem to adapt with all the “plot twists” that come our way. Don’t worry, we’re not complete weirdos. They still drive each other bananas and push each other’s buttons. 

At the end of June I reached out to our local epileptologist because we had another spike in seizures. Max needed rescue meds a few days in a row. He needed both  types over the course of a few days.

• clonazepam dissolved under his tongue if we’re seeing seizure clusters but he’s lucid and able to talk to us. I’ve come to call these his non rescue rescues because it’s if he seems “off” and we’re seeing a lot of spaciness, and facial twitching. Those both indicate he’s having a lot of smaller seizures.
• Valtoco nasal spray- this is his full blown rescue for a bigger seizure that Max is not coming out of or if he has 3 or more within an hour. This is used as an emergency- consider it the EpiPen of seizures. We use he is headed towards in status epilepticus. 

I also requested labs because it had been a long time since they’d run any. We did labs and she said we had room to go up on one of Max’s meds to see if it would calm things down a little until we got to Texas. It’s a rough position to be in. Matt and I feel like Max isn’t being cared for locally because nobody really knows what to do with him. To actually get it right from the team is rough that we’re just patching holes to get to Texas. Especially because at this point we still had two months ahead of us. She gave us a schedule to titrate up on one of Max’s existing medications. Almost immediately we actually saw an increase in his bigger seizures. Matt and I made the decision to stay on our current levels and dialed back to those instead of continuing the increase. We reached out to the doctor to tell her what we were seeing and ask for guidance but didn’t hear back for  two weeks despite calls and messages. When she got back to us, the recommendation was to go back down to our original dose on his medication ( we already had) and to wean off Acetazolamide at the same time as working him onto Zonegram. At this point, Max had been “off” for about a month. He was extra tired and his speech was suffering. He was having word retrieval issues, which if you know Max isn’t like him at all. His processing speed was off too. Everything seemed to be requiring extra effort. His speech was slurred and his intonation was off. I expressed our concerns over this many times to his local team. I also expressed concern over one of the side effects of Zonegram being speech/ word retrieval issues. Max often gets the side effects of AEDs (Anti Epilepsy Drugs) but not the perks of seizure suppression. Most AEDs are sedatives and can exhaust him. It’s amazing to Matt and me that despite his brain constantly throwing irregular electrical signals and being loaded with some heavy hitting medications, Max is an incredibly bright, funny, kind, and curious kiddo. He has been through SO MUCH and still manages to find joy and pursue things he loves. He deserves the absolute best which is why we are headed to Texas to get him in the best hands possible. 

July: Matt turned 40! We celebrated our best dude exiting his 30’s, put our house on the market, and celebrated America’s birthday (though I personally had mixed feelings over if she deserved one this year- I said what I said). We had been wanting to move closer to family for some time but kept waiting for Max’s seizures to calm down. It became evident that might not happen so  we decided to just bring our own crazy to the crazy party and put the house up for sale. We had 8 showings scheduled within the first 48 hours of our house being listed. Sidenote: if you need to sell or buy a house, I have just the ladies to do it for you. In the meantime, we were trying to determine if we wanted to build a house while living with family, or find somewhere. We found a house in Frankfort we both loved but it had an offer on it. Our luck has been atrocious to say the least so we weren’t comfortable making any offers or really doing anything until our house was pretty much sold. The buyer on the house we loved fell through and our agents were hustling to keep things moving for us with a big Texas deadline coming up. We knew if we were buying anything we had to be completely closed and out of our house and ready to go to Texas August 16th. Somehow, despite all recent luck, the stars aligned and we went under contract fast with multiple offers. We put in an offer on our dream house and it was accepted. We were able to get closed and moved into the new house on August 4th which brings us to August.

August: We made it! There have been times that I wasn’t sure we had anymore Ooomph left in us. The closer we get to the finish line, the harder things seem. It’s like the last 4 years are finally catching up to us. I’m incredibly grateful for Matt. I can honestly say that there is nobody else I could navigate this with.  I think the exhaustion and repeated trauma of having a kiddo with intractable  epilepsy can either drive partners apart or closer together. In our case, it’s definitely made us closer. We bring each other levity when it’s needed and he’s been the one to see me finally break when things get really hard. We are very lucky to have a great support system of family and friends but nobody else really gets THIS like he does. He’s my strong and steady and I don’t know how I could have managed all this without him. 

We leave Tuesday the 16th for Texas. First up for us is Covid testing, some pre- surgical labs, and a meeting with one of the surgeons . We had met Dr. Weiner when we were last in Texas but the other surgeon had been called away so we’re headed down a little early to meet him.  Dr. Curry is in charge of the minimally invasive side of neurosurgery at TCH. He’ll be the surgeon taking the lead on Max’s first big procedure. Max is slated to have a two week Stereo EEG. An SEEG is a minimally invasive surgery that will help the team find the source of Max’s seizures. They use a ROSA (robotic operating surgery assistant) to drill tiny holes in the skull and place miniscule wires with leads directly into spots of interest in Max’s brain. The wires allow them to record  EEG activity deep in the brain before, during, and after seizures. While undergoing the SEEG, Max will be in the EMU  (epilepsy monitoring unit) where they will  constantly be recording video and audio to catch any and all changes during seizures. This allows them to catch the best and most cohesive picture of what his seizures are doing. They can see the physical aspects outwardly but also the deep brain activity  and electrical impulses that isn’t accessible through a standard scalp surface EEG. This is particularly helpful in cases like Max’s where we know he is having a lot of subclinical seizures ( don’t cause outward symptoms). The SEEG is set to take place over 2 weeks. That could be extended or shortened, depending on how long it takes for the team to get enough data. They need to see enough of Max’s seizures to map them and determine if they are following the same trajectory. Through the use of the SEEG leads, they will be able to see where seizures are manifesting. This information along with a lot of other information gathered will be used to determine what epilepsy surgery will be our best bet to lighten Max’s seizure load. 

That is where we are at right now. We leave Tuesday with no return date scheduled yet. It’s taken a long time to get here and we are more than ready to see what is next. We know that if anybody can help us, it’s the team at TCH and are grateful for the opportunity to get the very best care for our very best dude.