I feel like this video sums up the spirit of Eloise’s week well:
Eat bath book? YES!!!! 😃
Sigh. Teething babies.🤷🏾♀️
Still teething. Still struggling.
I feel like a bit of a broken record writing this week — we’re now at 2 months of almost non-stop teething. Many kids like Eloise seemed to have had next to no noticeable teething pain — even if they were fed via tube. In fact, a majority of kids missing SCN9A, one of the sodium channels Eloise does not have, seem to have a condition where they cannot feel pain at all.
But, well, Eloise definitely can feel pain.
And her teeth seem to come in veeeeeeeerrrrryyy slooooooooowwwlly. Unfortunately for us, so far, no teething pain relief option — whether medicine or essential oils or baltic amber or homeopathic or cold/frozen food — has seemed to work with any consistency, especially not for the rough pain.
Seizures sticking around, but with some hopeful news
Weirdly, her seizures in March have seemed to mostly happen during the weekends. Last weekend she had a few more. Since every time after a cluster of them we’ve normally found yet another tooth coming in, we haven’t felt too concerned. But Eloise’s doctor thinks it isn’t normal, so she wants to see Eloise sooner than in May, when we had planned to go back. Which is amazingly hopeful that she cares enough to even want to do more.
Kids missing SCN1A, a sodium channel associated with Dravet Syndrome, seem to almost never have complete control over seizures via almost any method. But it can be a spectrum of severity and, at the moment, Eloise is more in the low to moderate severity group.
Also, interestingly, there is a group of researchers in the midst of doing a study on kids with Dravet Syndrome and whether breastfeeding/breastmilk helped at all. A quick google showed that breastmilk has proven to help reduce the risk of febrile seizures in the regular population so it could actually be that part of the reason Eloise’s seizures were so late in onset (so far almost every other kids’ seizures started much sooner than Eloise’s and with much more severity). So I’m glad we’ve made the tentative decision to have me pump long enough that we can hopefully keep giving Eloise breastmilk until she’s 2.5-3 years old. Just in case it really does benefit her that much.
Brian and I still working on getting our lives together
A dear friend was able to come and take Eloise for a few longer days this week, which enabled Brian and I to really get some decluttering done. This minimalism course has literally been life-changing. Before I started, every time I thought of something like my beloved LEGO sets or my art supplies or our full kitchen cabinets or stocked-full bookshelves, I felt dread. Why? Because there seemed to be SO MUCH STUFF and, try as hard as I could, I didn’t know how to get rid of more than a few items?
But now?
I feel SO GOOD. There have been a few really really powerful questions that have just really really helped re-shape how I think about things. In many ways, what it’s done is turn my attachment to things into a stronger attachment to the people and experiences I care about most.
Not only that, but it’s just opened up new areas of my life. Like, I’m going to start taking some painting lessons this weekend to help me move from copying other artists’ paintings to creating a style of my own that I can hopefully feel proud of.
Or finally getting some photos up of Eloise and us. Just so excited.
We’ve had professional photos done a few times and the results were great — yet I still struggled to find the time to get them printed and hung. But, after hearing Mary Susan’s advice, I ordered a mini printer for my cellphone and printed everyday ordinary images that held really warm feelings for us, instead. And, you know, even though I used to make a living as a photographer, I’m not sure I miss those beautiful professional pictures.
Mary Susan was right, imperfect photos of perfect moments may be better for our souls.
Working to build in joy where we can.
An update on using my phone differently
I mentioned last week that I wanted a way for Brian to tell me in a moment that he’s noticing me using my phone a lot around Eloise — but in a way that does NOT make me feel immediately defensive. Well, we came up with an idea. Brian just needs to bring me one of Eloise’s tiny little socks. The small-ness of it will instantly melt my heart and help me remember that I want to be present with her, not just get distracted on my phone.
I’m proud of that idea
Now, for life this week according to Eloise’s instagram.
Giving our little monkey extra snuggles this week (since she refuses to be put down anyway 😅),
Mallory, Brian, and Eloise
Eloise The Tiny Fighter 
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