For a brief, beautiful two months, Daniel was seizure free. This was the longest stretch since fall of 2018 when we first learned about Lennox Gastaut syndrome. We appreciated every day, but didn't get to excited, because we know how things go.
Last week, we started to see seizures again. Small and subtle, likely unnoticeable to someone who doesn't know what they're looking for, but we know exactly what we're looking for. Even though the movement was little more than a twitch, his eyes gave it away. Calls were made to all the doctors, records were between the hospitals, and the meds are in the process of being adjusted. So here we are again. Hoping that this simple tweak makes the difference. Hoping that, maybe, he gained enough weight in the last two months that he just outgrew the dose and needs more medicine. Knowing that's not likely, but hoping anyway, because we don't know what the next step is going to be if this doesn't work. Again.
Here's another thing about Daniel. He has a weakish immune system. I won't say he's high risk or immunocompromised. He was two years ago when he was on ACTH and steroids, but now he's not, and I don't want to downplay the seriousness of those who are. But he does tend to get sick more often than other children, and it is more serious when he does get sick. This past winter he was hospitalized for pneumonia and bronchiolitis. Watching him struggle to breathe until the nurse injected him with that steroid to open up his airways was one of the scariest things I've seen. And he has taken us on some crazy rides. So when it comes to covid-19? Well, I hope you'll understand why my family is taking all the precautions, and why I'm practically begging you to do the same. If we find out 6 months from now that wearing a mask in public and inducing social distancing made absolutely no difference whatsoever and didn't even prevent the spread by .001%, I will still have no regrets about doing both. Because it was a precaution that was minorly inconvenient that some people thought just might help. This is the time to be overly cautious, because people like Daniel might need it. Is he likely to catch covid-19? Probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.
Another thing about uncontrolled seizures. SUDEP (Sudden Unexpected Death in Epilepsy) is a real thing. Some of the biggest risk factors are early onset of seizures and uncontrolled seizures. I would consider four months of age early onset, wouldn't you? I don't think we're being unreasonable in our thoughts and actions, but I'd be lying if I said that Nate and I weren't concerned. Maybe even freaked out a little. If his seizure movements are so small that the monitor we have in his room doesn't pick them up, how many seizures could we be missing at night? So I'm doing what Danny's parents and Henry's parents wish they would have done: I'm spending my nights on the couch snuggling my baby in hopes that even the most subtle seizure will wake me and we won't lose our baby to SUDEP like they did. Is Daniel likely to die from SUDEP? Statistically, probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.
And through all of this we've been dealing, like many of you, with distance learning and unpredictable Minnesota weather (is it spring? Is it winter? Who even knows anymore?) and increased work hours (because let me tell you, this has NOT made life easier for your pastor. Or their family.) and life as we know it bring turned sideways then upside down and then tilted back the other way. Under normal circumstances we would push to get Daniel admitted to Children's for an overnight EEG so we could track seizure activity during sleep. I'm thinking that's not high on the priority list right now .
So there that is. Somewhat coherent ramblings on covid and SUDEP and the reality of having a baby with uncontrolled epilepsy during a pandemic. I'm not looking for sympathy or pity or a pat on the back. I'm not really sure what I'm looking for if I'm looking for anything at all. Maybe I just needed to get this out because there's someone else out there who needs to read it, too. The spirit is tugging me and I've learned not to say no.
