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. 🤞🏾🤞🏾🤞🏾
And, we can’t forget that it’s been nice to have a 17 day break from seizures. Will this last forever? Probably not. It’s nice anyway, though.
The week 55 highlights (according to her instagram)
From the Eloise the Tiny Fighter Instagram stories this past week:
“Wasn’t me, mum.” -Eloise
One sign your baby loves you was that they prefer you over strangers — Eloise does not. All you have to do to win this adorable kid’s heart is to dance with her, sing with her, bounce with her, or make kissy noises on her face. Then she’s all yours.
And you know what? I don’t mind that she loves everyone just the same.
I hope I can be more like her when I grow up.
🥳 No seizures this week! 🥳
Well, her blood test results are back. STILL her Keppra dosage isn’t high enough to be making a difference. Which kinda means it’s as if she’s been on no anti-seizure medication since her seizures started on November 6th. I guess my gut was right — it wasn’t Keppra that was making the difference. It’s just been luck. (Although we have suspected she might occasionally be having some absence seizures.)
- Week 49 (Jan 1-6): 0 seizures
- Week 50 (Jan 7-13): 15 seizures (Jan 11 went to the hospital)
- Week 51 (Jan 14-20): 16 seizures (Jan 17-18 tried CBD full spectrum oil)
- Week 52 (Jan 21-27): 21 seizures (Jan 27 increased Keppra from 90mg to 135mg 2x/day)
- Week 53 (Jan 28-Feb 3): 5 seizures (Feb 1 increased Keppra to 135mg 2x/day, Jan 28 tooth pain started)
- Week 54 (Feb 4-Feb 10): 0 seizures (Feb 10 decreased Keppra to 130mg 2x/day, Feb 9 congestion started)
- Week 55 (Feb 11-Feb 17): 0 seizures (Definitely still teething, Feb 18 will increase Keppra to 160mg 2x/day)
While I would love to say maybe something is going right, I see far too many stories of families whose kids like her who went seizure-free for months or even years, only for them to come back out of nowhere worse than ever. Sometimes with fatal results.
So, for now, we will just savor these days knowing they won’t last forever.
💪🏿 Therapies are making a huge difference 💪🏿
If you have ever tried to learn a foreign language, you will know that if you just have one class a week for 30-60 minutes, there’s no way you’ll ever learn it. Even twice a week and it’s almost useless. What you need is at least 3-4 if not 5 times a week.
It’s the same with therapies. Once a week is basically useless. To get anywhere you need at least 3 or 4 times a week.
For Eloise, I’m not sure how much our doing physiotherapy ourselves was helping — after all, we aren’t trained physiotherapists. But now, with 3 physiotherapy appointments last week and 3 this past week, the difference is very clear. She’s starting to put weight on her feet. She’s starting to grab all kinds of objects (even if she doesn’t look at what she’s doing). She’s sitting up straighter.
I would kick myself for not doing this sooner, but the reality is I didn’t know we could. So I will just try to be grateful that we know now.
We even added a new therapy this week — music therapy. Via zoom. I actually found myself crying. We need to add more music to Eloise’s life, and ours, apparently.
🏰 Monday we go to Tartu! 🏰
I’m trying not to get my hopes up too much but, well, we just have hope that we will find some better care for Eloise in Tartu. Not only is the hospital we’ll be going to there a teaching hospital, but we’ll be going as a part of the new Rare Diseases Center.
The only thing that is a bummer is that, due to COVID restrictions, they still only allow one caregiver to be with kids. If Eloise is still fussy by the time we go, this will make it very very hard. We decided it makes the most sense for me to go since I know the most about other kids like her (whereas Brian knows better what her current capabilities are). But I’m still pumping, and if she insists on crying and throwing herself back in protest and only being carried and never sleeping — like she’s been doing a lot of this week — then it is going to be almost impossible to care for her by myself. I explained this to the nurses on the phone, and they said to just ask for the nurses on duty to help. I begged and they said, “Well, why don’t both you and your husband show up on Monday and we will see how full the hospital is.”
So we are praying and crossing our fingers for a miracle that they will let us both stay.
💪 Development 💪
I’ll let the videos do her talking.
But this girl. I always forget to try giving her a cup but this morning I gave her some oat milk and she did great!
Who knows? Maybe by the end of 2022 she will be able to do a little of her feeding herself — way ahead of schedule.
But I decided to take out the stacking cups we had hidden away in her closet — a present someone gave us for her birth before we knew what life would be like. I wasn’t sure if she’d ever reach a developmental age where she could understand them let alone have the skills to use her hands to play with them.
I was wrong. She can already play with them. Brian stacked them up and put her hands on them during one of their physiotherapy sessions at home and she immediately was happy. It’s just, she thought they were new snacks, not new toys. 😂
Still adorable. 🥰
🧬 We could still use help 🧬
I mentioned last week that we had a document people were helping us do research on. I cannot even begin to tell you the relief I feel that so much has been done for us. The information that has already come has been so useful. But just in case you were wondering, the research isn’t quite done yet — we still need a little more help.
Savoring this development-full week,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 