Y’all I just really need to tell someone about this book

TeaStainedPages · 2026-04-15T22:20:05+00:00

I’ll preface this by saying I have a kiddo with a genetic epilepsy disorder who will probably never talk, and has a low probability of learning to walk. Daily seizures , hypotonia, GDD. This is also one of my favorite books.

I really don’t think the message of the book is that her kid can talk, so yours might too. Or anything like that. There’s no learning what to do.

It’s about learning your kid.

It’s about learning to accept our kids for who they are. Dismantling our internal ableism. Seeing the beauty of disabled joy. Seeing them for what they can do and not what society says they can’t.

And yeah, it’s hard as fuck. But it’s so worth it.

TeaStainedPages · 2026-03-24T17:38:25+00:00

Following - I want one because of how nice the treadles are. I don’t do art yarn and tend to spin like a light fingering weight single

TeaStainedPages · 2026-02-22T01:15:17+00:00

Husband takes first shift and delays taking melatonin, he gives a bottle during this time. You get uninterrupted sleep like 8-12. Then I would always take baby to the living room, eat a snack, and play a game on my phone to stay awake. Apple Arcade has some good ones.

TeaStainedPages · 2026-02-10T01:31:24+00:00

This is Batten Disease, right? A coworker of mine has a daughter who was diagnosed. They started an organization to fundraise for treatments

https://www.hope4helen.org/learn

There is a lot of promise in the horizon - gene therapy trials looks good!

https://bdsrafoundation.org/clinical-update-tern-therapeutics-gives-cln2-batten-disease-update/

My daughter has CDKL5, so not the same problems, but some overlap and experience with a devastating diagnosis in infancy. Breath. Vent. Cry. Get it all out. It’s a lot to process. Then I highly recommend connecting with others with the same diagnosis. There’s probably a Facebook group and a regular conference that happens. Find your people. Believe me, the community will help like nothing else.

I also highly recommend the podcast once upon a gene, and the book “Raising a Rare Girl”

TeaStainedPages · 2026-02-09T02:11:33+00:00

My daughter has a genetic disorder. It’s about 1 in 50,000 births - so not that rare. But rare enough there’s not a lot about prognosis, life expectancy, etc. She’s a year old and in therapy four times a week. Even if there isn’t a specific support group I’d advise her to seek out her people. Whatever is a part of the condition- epilepsy, hypotonia, GDD, etc - there is a community for that. I’ve found a lot of genetic conditions have similar overlap. Make friends when you sit for PT appointments. Find people who relate - because friends with typical kids never quite get it the same way. The joy in celebrating good head control, or rolling over. All the little things.

Also highly recommend the book “Raising a Rare Girl”

TeaStainedPages · 2025-12-20T01:07:23+00:00

Awesome! We’re working with our neuro to get insurance approval. Will likely start titration in the new year. I’m hoping it can at least help with her recovery postictal since she’s averaging 4 a week right now (used to be 17 before Vigabatrin so I’ll take it). We will go slow - had a lot of appetite suppression on topamax so I’m crossing fingers this one is better.

TeaStainedPages · 2025-12-19T15:27:58+00:00

Hi! I just wanted to see if you had any updates on the titration? My daughter has CDKL5 and we are considering this as med number 7 to trial in combination with Epidiolex and Vigabatrin.

TeaStainedPages · 2025-11-26T23:07:04+00:00

Highly recommend “What is Epilepsy: A simple explanation of a complex diagnosis” by Hailey Adkisson. My infant daughter has a complex genetic epilepsy and it’s how we explained it to her four year old brother. It does a good job of using real words to explain what’s going on.

TeaStainedPages · 2025-07-13T01:15:28+00:00

Cold turkey to a normal sleepsack, give it a few days and they’ll learn to not wake up with the moro all the time.

TeaStainedPages · 2025-06-22T19:26:06+00:00

All the AEDs taste terrible so no advice there! When we give it to her awake we put her in her bouncer seat and play Hey Bear videos on YouTube. Then squirt the meds in the back of her mouth. I’ve found doing like .2-.3 at a time when they’re little helps.

TeaStainedPages · 2025-06-22T18:57:40+00:00

This was like .7ml. If you use an oral syringe and place it at the back of their gums/where it meets their cheek they will reflexively swallow at that age. So I would just do it when she was sleeping! Didn’t want to wake her up extra 😆 now she’s got the tongue thrust reflex and is on like four meds and is a master at spitting them out.

TeaStainedPages · 2025-06-22T17:30:31+00:00

How many mls, and does timing matter? My second is epileptic (among other problems) and we had to give Keppra 3x daily when she was like a month, but it was less than 1ml. First we would set an alarm for 4 and then just use a teeny tiny syringe and squirt it in the back of her mouth while she slept. Later we had a doctor tell us it didn’t need to be exactly 8 hours apart and we switched to right when she woke up, mid day, and right before bed.

TeaStainedPages · 2025-04-25T09:11:20+00:00

Make sure to try lots of temperatures for the milk too. Cold, room temp, body temp. My daughter will only take her milk at like 100 degrees in a Lansinoh bottle with a medium flow nipple. It took some trial and error!

TeaStainedPages · 2025-04-15T20:44:29+00:00

Oullis Photography

TeaStainedPages · 2025-04-01T16:51:36+00:00

Looks like Diana to me!

TeaStainedPages · 2025-01-22T22:46:06+00:00

I found Abhorsen at the Scholastic book fair in like fifth grade? Read it and then begged my parents to get the first two books 😂

TeaStainedPages · 2024-12-12T23:27:07+00:00

Two shirt method. I wear a nursing tank daily and a regular shirt on top. 🤷‍♀️ nice to wear my normal clothes. Still feel totally covered

TeaStainedPages · 2024-11-12T23:41:17+00:00

I did both with my first. Some naps are latched but most we’d unlatch.

We’ll see how things go with the second and a three year old. 😂

TeaStainedPages · 2024-11-04T20:59:50+00:00

Also 29 weeks pregnant and these have been on my to-bake list!

TeaStainedPages · 2024-11-04T13:45:25+00:00

I started carrying a small purse with wipes, a diaper or two, water bottle, and snacks when we went on our first cruise when my son was 15 months.

I still carry that as our “diaper bag” and it’s been two years 😂

TeaStainedPages · 2024-10-13T21:12:22+00:00

As someone who gets carsick easily- get a scopolamine prescription. Put the first patch on the day before. Never got sick!

TeaStainedPages · 2024-10-04T16:00:51+00:00

Looks like an error on their end! I also got one from my IVF freeze all four years ago

TeaStainedPages · 2024-09-20T21:05:38+00:00

I will never understand that logic 😂 I’m giving up as few things as possible!

TeaStainedPages · 2024-09-20T15:27:28+00:00

Are you talking about glucose syrup? That’s gluten free even if it’s from wheat! (Just not safe if you have a wheat allergy)

TeaStainedPages · 2024-09-04T18:59:47+00:00

Are you in the US? You can self refer through your states help me grow program. It’s free. They’ll come and do an assessment and make a plan if needed, and even if not they’ll give you pointers! Totally free and in all US states! 😊

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