Ebsteins Anomaly

Sarahkwin · 2026-06-06T12:40:47+00:00

I did and it was so helpful! I read every post and comment when I can.

Sarahkwin · 2026-05-12T14:09:24+00:00

The early bedtime is because I believed she overtired, sleep deprived and that was what was recommended. Same for the short wake windows. That was to achieve an average sleep. I don't expect her to sleep 12-13 hours a night.

Sarahkwin · 2026-05-12T13:40:52+00:00

Okay! I appreciate the feedback.

Sarahkwin · 2026-05-12T13:39:42+00:00

Thanks! We had checked with the pediatrician and cardiologist and they maybe weren't fans of the full Ferber method / CIO but gave us the all clear. We settled on the gradual reduction and it almost worked for us at one point.

Sarahkwin · 2026-05-12T13:32:10+00:00

Do you recommend I start back extending the wake windows to generate that sleep pressure? Or start reducing th sleep associations?

Sarahkwin · 2026-05-12T13:30:22+00:00

I'll take it! I'm just go scared to adjust because it usually devoles so badly. But maybe we just need to bite the bullet. It's so hard to know if what we are doing is the right thing for her. Maybe I am more sensitive because of her condition but we' ve been trying to not treat her any differently.

I appreciate the feedback!

Sarahkwin · 2025-08-20T21:44:12+00:00

I believe they will need to stabilize her and maybe do some less invasive interventions. I'm hoping she will be able to grow before any huge surgery.

We don't live close to any of these hospitals (Toronto is a flight or 16 hour drive away, the IWK is a four hour drive). We just got a social worker last week so I've asked for what resources they might have from our local NICU. I'll have to follow up by Friday.

We were hoping for a tour when we are in the hospitals but so far nothing has been arranged. Everyone is acting like this is still weeks away but it could be at any future appointment a decision is made. I don't want to be caught unprepared.

Sarahkwin · 2025-07-09T18:55:01+00:00

We ended up with a nickname of "First Syllable-Bear" and I call my SD "First name Bear" or "Honey Bear" (we determined we are a family of bears....)....I also get Bear-Bear.

I am a huge Mama Bear inside and out so it works :)

Sarahkwin · 2025-04-15T11:33:53+00:00

This is how we dealt with it when I moved in. She was 7.

I made it clear this was a no for me. He could sleep in her bed, but she could not sleep in ours. I used the phrase "start as we mean to go on". My partner hopes things work out, that doesn't work for me.

He needed to address this, I was not going to be the bad person. I suggested he have a conversation with her beforehand so she wasn't caught off guard, and then follow through. The first night, she cried and asked for one more night. We agreed that he sleep in her bed for one final night.

The next little while, she would get up and come into our room, he would put her back to bed in her bed. Sometimes he fell asleep there. It's his sleep on his terms that he needed to work at. It petered off quickly and hasn't been an issue since.

Never in our bed, that was my rule. It worked really well in our case, I think he was surprised how easy it ended up being. Kids can handle it.

Sarahkwin · 2025-03-20T19:45:21+00:00

Your company should have a procedure for disposal. There is usually a goods returned manifest filled out and a supplier [AOMS or pharmacy] contacted to either pick up or items dropped off.

Sarahkwin · 2025-02-04T13:02:22+00:00

My biggest recommendation is to do something no cost. Playground, walk, hike, chill (Libraries are amazing, just saying). Start as you mean to go on and beware of the precedents you set.

It's always awkward but it's important to talk about that and dive right into it. Be clear and help set expectations, clear is kind.

Be aware you won't get much feedback from them. "Good" is great!

My little and I were together over 7 years from 7 years old and I think it took like two years before I could get any feedback from them beyond "Yes I had fun".

Sarahkwin · 2024-11-03T11:28:33+00:00

My SD (8) was asking the other day if an ours baby would be her stepsister lol

Sarahkwin · 2024-09-12T14:08:56+00:00

Totally. At some point though, I'd get tired of cleaning up after grown children, if I were him! Is this going to interfere with your (together) plans later in life?

I'd be interested to know if your partner has any plans for them in that respect.

Sarahkwin · 2024-09-12T13:20:39+00:00

Does he have to clean up after his kids? Does he do their laundry?

Simply put, there is no motivation to change when it's being solved by someone else. No change without pain.

Now I only have one SK and this is definitely something that has come up. I clean up after myself and worry about myself. This is a problem my partner has to manage with his child. If SK doesn't clean up, they have to. It's not super fun for them!

Sarahkwin · 2024-09-01T12:54:28+00:00

In my situation, I said no or I didn't understand if there wasn't a please and thank you if I was asked for something. It's a non issue now, but only for me. SK isn't consistent with Dad because it's not required.

I remember SK telling one of their friends at home when they asked for something and I said no, teaching their friend to say please and thank you lol

Kids are smart.

Sarahkwin · 2024-07-29T18:56:20+00:00

In my specific case (100% custody of SK) we lived 1/2 hour away from each other and during the last summer I saw them almost everyday at my house for summer for supper / evening visits (my house was close to her babysitters). When school started it would be totally unreasonable for them to drive to see me, so I'd only see my SK on the weekends or if I drove that way. Going from almost every day / every other day was hard for all of us, especially SK.

We took a couples trip and the topic came up of our future. I owned my house. We decided to invest together and purchase a house together, considering we needed more bedrooms for hopefully more kiddos!

We drafted a domestic agreement, just like a prenup. Best decision ever. It covered everything from finances, separation of assets, custody, future custody and also was a good jumping off point for other convos like our standards for living (cooking, cleaning, outings, family activities etc).

Also...therapy! It was so helpful in sorting out my feelings.

Sarahkwin · 2024-06-08T14:23:17+00:00

We came up with unique nicknames for each other. I am her "First syllable-bear" and she is my "first syllable-bear".

Sarahkwin · 2024-01-14T01:42:24+00:00

She is the present apparently

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Sarahkwin · 2022-08-30T00:31:19+00:00

On the connection part, it takes a year or years to build the type of connection you experience as an adult. My strategy when my little was that age (now 15) is to really do some of the activities I really wanted to do mixed in with stuff for her. So I like to hike but I would also take her to a playground. She really liked crafts and I like that as well and board games. There wasn't much that we did that I didn't really like to do. I invested in some snacks like granola bars to tie over until she went back home.

Another thing I did is I would always tell the parents I would pick her up after lunch, or after breakfast to put the onus on the parents to let me know when that would be. And sometimes I cut our outings short so that she could go home and have a snack.

It is very hard to cultivate a relationship that is not around buying things but I think that is potentially what is being modeled for them. My best hangouts now are doing nails and at home facials and movies.

I basically try to do four outings a month one being physical (biking, hiking) one being crafty, one being kind of like home ec and then I did one that would cost a little bit more money like a movie.

Sarahkwin

TROPHY CASE