First of all, thank you so much for the comments here on the blog, emails, messages, and comments on Instagram/Snapchat/Facebook offering up your good vibes, prayers, and positive energy in Emmett’s direction. (For those who aren’t aware of what’s going on, you can see the original post right here.) I can’t tell you what it means to our family to know that so many people are focusing on love and health for our little babe. As I said before, I genuinely believe in the power of positive collective thought because I’ve seen it work. I have no doubt that this is part of the reason Emmett is improving. If you can, please keep sending your prayers and healing vibes our way. We are so grateful.
I haven’t posted an update since the original post last Monday because at this point, it’s difficult to give one. We just don’t know enough yet. The medication has – so far – stopped any visible seizures, and that is absolutely wonderful. It only took a few days to stop them, which is also wonderful. However, as soon as we thought we were five whole days seizure free and in a place to start the long (six-ish week) wean, he had another episode that, while we aren’t completely certain was a seizure, looked enough like one that we had to postpone the wean for four more days. Studies have shown that the medication working quickly is key to having a chance at a better prognosis (unlike other types of epilepsy, this type is incredibly dangerous in that as the seizures go on, more and more brain damage accrues and the chances for severe physical and/or cognitive disabilities increase), so this was a disappointment, but it was more of a small bump in the road than anything majorly concerning. We began the wean on Monday, and so far, things are going well. I almost don’t want to type that because I don’t want to jinx it, but I think it’s important to acknowledge the positive things that are happening. We are so incredibly grateful that it seems to be possibly working for our boy. Regardless, it will be a long road, with a 50% chance of the seizures eventually returning in the first year – but if it is working now, it is a major step in the right direction.
On Wednesday afternoon we took Emmett to be hooked up to a 48 hour video EEG that is currently running in our house. This afternoon he will be removed from it, and Monday we have a doctor appointment to see the results. (Damn you, weekend, for making us have to wait so long!) Even though his seizures appear to be gone, until his brain waves normalize, we can’t say for the sure that the medication is working. I’m certain I won’t be able to sleep until after that doctor appointment – not that I can sleep anyway with Emmett on this medication. Man does this stuff make babies cranky. I mean miserably, inconsolably cranky. In addition to just making them feel like crap, it causes severe weight gain and an insatiable appetite, extreme anxiety, acid reflux (we’ve tried two medications to deal with that so far and he still has to nurse sitting up and sleep in one our laps sitting up all night long), and other side effects. Poor dude also has a tooth about to pop through, and, as we came to find out after taking him to the pediatrician Wednesday, an ear infection (this medication also greatly suppresses the immune system). This medication is both a hero and a villain. It can save babies, or at the very least give a possibility of helping their prognosis. But it also strips them (temporarily I am told, thank goodness) of their smiles and laughs and desire to play and interact and replaces those things with constant moaning, crying, screaming, and restlessness. Every time we see even a half smile appear on his face, it brings tears of joy to our eyes. For real.
As horrific as this disease may be, it has already changed us in ways for which we have to be grateful. I cannot imagine ever taking anything for granted with my children again. Or with life in general. I can’t believe the trivial things I worried about before this started. I can’t believe the things I complained about either. Those newborn nights that felt like endless torture were a pleasure cruise in comparison to this! Family, friends, love, simple moments – that is all that matters anymore. I’ve always felt this way, of course, but now I am forced to realize it every single second. Any sort of glimpse of normal I can get feels like a beautiful luxury as well.
And speaking of “normal,” as much as caring for Emmett (and making sure his sister is doing well and not adversely affected by this) is a full time job right now, Robbie and I will both have to return work sooner than later. (Robbie did have to leave for a couple of days last weekend for work, but has mostly been able to take time off since we were initially admitted to the hospital. And thank goodness his mom flew in to stay and help out for the first two weeks so I didn’t have to be alone.) Reality is reality, and medical bills are no joke, insurance or otherwise. We simply have to be bringing in income right now. On top of that, feeling some sort of normalcy is important as well (and something that really resonated with me when we visited a therapist last week to try to make sense of the emotional aspects of this), and that includes working. As you guys know, I partner with brands on a regular basis to produce content here, which is the main way I make my living. I’m very lucky in that the agencies with whom I work have been incredibly understanding and allowed me to break my contracts and cancel my sponsored posts this month to focus on my family. But I will need to produce income again, so depending on what we find out at the neurologist Monday, the plan is to start posting here again in September. It won’t be everyday, and may only end up being a couple of posts a week, or even less. But I do plan to make this space active again, on some level. (I actually have one sponsored post scheduled for the last day of August, and while it took several days of broken up periods of work to be able to put it together, it felt good to focus on something that gave me even a small sense of normalcy.)
I’m going to end things here for now. This is admittedly a poorly written, run-on of a post, but I’m going to leave it as it because it’s real and I’m not in a place where I care much about things being perfect right now. Again, I appreciate you all keeping Emmett in your thoughts and prayers more than I can say. While I do occasionally post personal things here, I try to make it a space separate from my life with my family. Right now though, what’s going on with my family is everything, and I feel compelled to share some of it because, yet again, I believe in the power of collective positive energy. Please cross your fingers hards for positive EEG results on Monday. I will keep you posted here and/or on Instagram as I’m able.
(The top picture was taken two weeks ago, after we got back from the hospital. Although my little man looks as adorable as ever right now all chunky monkey-like from his medication and all wrapped up in bandages around his head from the EEG, I’d just rather share a photo where he’s looking more his regular old self.)