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.
I took a break for my birthday (which was Sunday, the day after Eloise’s) to rest and process some of what was Eloise’s first year in a beautiful little cabin in the woods 45 minutes from our home.
I’m so glad I did.
Eloise’s birthday story (according to my Instagram and her Instagram)
The week 52 highlights (according to instagram)
From the Eloise the Tiny Fighter Instagram stories this past week:
A lot fewer seizures this week
This week has been great. It’s possible that the higher dose of her medication Keppra helped Eloise’s seizures, but my guess is actually just that she isn’t sick. Regardless, it’s sure been nice that she hasn’t had many seizures these last 7 days. It always makes life feel a little bit more normal and manageable.
Total of 5 seizures during this week (week 53).
- Friday 28 Jan: 2
- Saturday 29 Jan: 0
- Sunday 30 Jan: 1
- Monday 31 Jan: 2
- Tuesday 1 Feb: 0
- Wednesday 2 Feb: 0
- Thursday 3 Feb: 0
Kicking off way more therapies soon
Thanks to the tips of a local mom, we are on our way to hopefully really getting Eloise the help she needs. This week we met with two new physiotherapists and an occupational therapist this week who will come to our home. They were incredible. They asked such good questions and really really seemed to care. I cannot tell you how much hope that gives us. It also means that, very soon, Eloise will have more like 2-4 physiotherapy sessions per week rather than what we have had currently — 1-2 physiotherapy sessions per month.
At the moment, we now have to pay out of pocket for all of these therapies, but we’re hoping that within a few months that most of them will be covered by various local and national funds. It’s just going to take a lot of phone calls and e-mails and paperwork. 😅
As one of the therapists said, “Getting into the system and getting set up is really hard work, but once you figure it out, it gets so much easier.”
I think she’s right.
We’ve re-applied for Eloise’s disability in hopes they will give her a more severe one that will give her access to far more funding (as well as give us access to paying for a regular caregiver). We’re still waiting on Tartu’s rare diseases center to get Eloise an appointment. And between the new incredible therapists we have on our team who know who to contact, and a friend who has helped us so much by calling so many places — I think we’re going to be okay. It feels good to be able to say that. I wasn’t so sure just a month ago.
Getting some rest for myself
Getting away to the cabin in the woods was so good for me. (You can see the cabin here. And, any Estonian friends, you can always contact the owner — Kai Aareleid — directly to book it for cheaper than on AirBnb.)
I did some reading while I was alone, but realized one of the things I wanted to do was to begin reviewing all the old videos and photos of Eloise. Why?
For awhile now I’ve meant to categorize them and upload them to a youtube channel for her. I wanted to document things so we could remember, but also so that if other parents came later, then I could send them to the channel so they could see what might happen with their own kids.
While I was at the cabin, I got through all the videos of Eloise’s first 6 months. It brought up so many emotions, many of which I’m going to need to process a bit more. But, mostly, I noticed that when Eloise developed her voice — June 3, 2021, a few days after her tongue tie was released — Brian and I started feeling so. much. lighter. Life with Eloise went from one full of grief to one full of joy when she began to “talk” back.
Even as I write today, Eloise is screaming happily in the next room. This is what she does almost 24/7 these days.
I’ve still got a lot more videos to sort through and upload, though. I’m thankful I got to go through so much at once, though, because it really helped to wrap my brain around Eloise’s first year. My hope is to get a post done sometime in the next month summarizing her development — to help me remember and process, and for parents with kids newly diagnosed like Eloise.
Development
Speaking of Eloise’s development, as I looked through the videos in my time away, I noticed that her gross motor development began to slow down around 5 months. Since then, she hasn’t really developed a lot. She used to be able to handle tummy time for 5 minutes at a time, but now she can’t go longer than 10 seconds. She used to be able to roll, but now she stays still on the floor.
I’m still hopeful that she will continue to develop and will eventually sit, crawl, stand, walk — all of it. But there’s no way to know.
Finding out more about her genetics
I’m not sure what’s standard in genetics, but I don’t think we got a list of Eloise’s deleted genes, nor the list of disorders associated with them. So it seemed like a good idea to make that list for ourselves and for all the doctors and therapists we’ll see over the years.
Making that list was eye-opening. In part because there was information that seemed quite relevant. Like the fact that if her eyes being out of sync are left untreated then it might lead to partial blindness. Or the fact that she has two genes associated with muscle weakness that actually have treatments out there that could help her with her development now.
We’ve been assigned yet another doctor at the local children’s hospital. (Why? I’m still not sure.) We’ll see her on Monday. I don’t have a lot of expectations, to be honest, but I wrote her about some of these genetic issues we uncovered in hopes maybe she’ll take an interest and help us test and then treat them.
Let’s see what Monday brings.
Savoring this week full of hope,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 
You three are amazing! ❤️❤️❤️
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