This kid takes forever to grow a new tooth -- does anyone else have a kid who takes a month to grow one? But when we got such incredibly great news this week, it's hard to really complain.
56 weeks: Teething, miracles, and waiting
55 weeks: 17 days seizure-free
Between Eloise's tooth still coming in and her practicing all kinds of new skills, we have been so encouraged this week. Yet like most parents, we've still been pretty worn out by all of her crying and not sleeping. Thankfully, though, her fussy period shouldn't last much longer. At least we hope. 🤞🏾🤞🏾🤞🏾
54 weeks: Exhausted yet hopeful
1 new tooth, 1 stuffy nose, 1 pair of shoes, 1 scheduled hospital visit, 1 struggling-to-nap baby, 8 appointments, and 10 days of no seizures = a set of exhausted yet hopeful parents.
53 weeks: Therapy reset
Overall, really, this has just been a fantastic week. We don't get to say that often, so I'll savor this time while it lasts.
52 weeks: We ❤️ our virtual village (you)
Unlike probably many parents in similar positions, you could say this statement is true of us, "As the parent of adorable Eloise -- who is definitely very disabled -- I am so thankful every time I hear, 'Have you tried [insert unsolicited advice here]? It has saved us so much heartache and pain, and I think it will continue to. We wouldn't have made it without our virtual village." At least at this stage in Eloise's life. So many many many many things we have learned and been able to help Eloise with so far have all come from suggestions from those who read this blog -- many of whom began as total strangers to us. So let me just say a huge thank you from the bottom of our hearts.
51 weeks: Feeling more hope
I feel so much lighter than last week -- for so many reasons. Even though we had a short setback, we really had a lot to be encouraged about.
50 weeks: Hospitalized. Again.
We always expected that Eloise's 16 day seizure-free streak was only temporary. What we did not expect, however, is that her seizures would come back and almost immediately send us back to the hospital. All seizures suck. But SCN1A-related seizures are especially brutal.
49 weeks: Setting dreams and goals
With a 16-day pause from seizures (although today they came back 😥), it gave Brian and I some time to start thinking about our own needs, planning for her future, and enjoying the fact that she is still developing.
48 weeks: 10 days of no seizures!
Eloise is 11 months old, wow! Looking back, wow we have so much more capacity this week than we did a month ago. I think there are quite a few things contributing.
Our 2022 word just might change our lives
I can’t remember the last time I made a New Year’s resolution. And I never really understood that trend to pick a “word” for the next year. Yet here we are. With a word to help guide our lives in 2022. But it means way more than I’d ever imagined. And I think it has the potential to change our lives.
My book: Valgus Pimeduses (Light in the darkness)
From time to time, someone says, "Hey, Mallory, you should make a book!" So, well. Here I am, telling you about the book I made. Although perhaps not the book some were expecting.
Eloise The Tiny Fighter 