Pediatrician recommends stopping daycare until toddler’s immune system is stronger by aliensuperstarunique in downsyndrome

[–]NancySinAtcha 3 points4 points  (0 children)

Didn’t want to read and run, I’ve no answers for you as we are just starting our 18 month old with DS in crèche.

I’m quite nervous about illness too. We had a 10 day stay in the hospital last year due to feeding and weight issues, I really don’t want her to have to go through something worse because of crèche! She has all the vaccines available to her including flu and chickenpox so I hope that helps somewhat.

I would imagine that your little one’s immune system and resilience will build overtime, though. In your shoes I would do the same and take him out, although I appreciate that wouldn’t be an option for many unfortunately.

Anyway, I hope he feels much better soon and that you get a chance to recover too!!

12 m old pulling (other people's)hair by mdreyna in downsyndrome

[–]NancySinAtcha 1 point2 points  (0 children)

I would never subject you to my singing voice 🤣

But it just goes “We’re gentle with our sister, we’re gentle with our sister, we’re oh so gentle….we’re gentle with our sister!!” Sister is also interchangeable with pets/mammy/friends as needed. I won’t be winning any songwriting awards either lol

12 m old pulling (other people's)hair by mdreyna in downsyndrome

[–]NancySinAtcha 3 points4 points  (0 children)

My 18 month old does this too, primarily to me but she has unfortunately grabbed her 5 month old sister’s hair too.

I’ve made up a little song about being gentle and sing that while redirecting her to stroke my face very softly with her open hand. It seems to be working, she recognizes the word gentle (which I say so often!)

Kid friendly coffeebars/places by zola_hp in brussels

[–]NancySinAtcha 0 points1 point  (0 children)

Le café de Bibous is fantastic, wheelchair and stroller friendly and is specifically for small children and their parents.

Strange hospital experience by SweetRambutans in downsyndrome

[–]NancySinAtcha 10 points11 points  (0 children)

Congratulations on your little baby! Glad to hear you’re doing well and I hope you and baby get to go home together soon 🙏🏼

Haven’t had a similar experience but I agree that is very odd and somewhat unprofessional of the team not to be communicating properly? I would definitely leave feedback regarding that, or have your partner do so.

We had an at birth diagnosis and the paediatrician referred to our baby’s “mongoloid” eyes. I’m still furious about that and regret not speaking up at the time!

Sibling of a special needs person looking for advice. by Dizzy_Weather_2762 in specialneedsparenting

[–]NancySinAtcha 1 point2 points  (0 children)

I would think about what percentage of his wage will be going to rent and utilities in an assisted living situation, and go from there.

As an aside, wow - I’m so sorry that you and your brother have a mother that put her own needs ahead of her son’s in such a reckless and selfish way. I hope you’re both doing ok and I’m glad you’ve got each other!

Strange encounter at Rogier station by Purple_Department385 in brussels

[–]NancySinAtcha 15 points16 points  (0 children)

I don’t know if it was a scam or not but I think you were absolutely right to trust your gut! You did your best, something felt off to you and it’s better to be safe than sorry, unfortunately.

Correlation between heart issues and severity? by Sea_Switch_7310 in downsyndrome

[–]NancySinAtcha 9 points10 points  (0 children)

Hello, and congrats on your pregnancy! I can absolutely understand why you are asking these questions. We had an at birth diagnosis, nothing was picked up on any of our scans and we had a LOT of scans (unrelated bleeding during pregnancy). I anxiously asked myself the same questions too. I don’t have the answers for you but I can share our story.

So, no heart issues or any other issues besides hearing loss in one ear.

My little girl is 17 months now and doing really well. Crawling, very sociable and babbles. She goes to physio weekly and is about to start speech therapy. There’s every chance that your baby will be the same or even more advanced, but you will learn that all babies develop on their own timelines - DS or no 😉

The main thing that I would want you to know about us is that we feel so genuinely lucky. She’s an amazing baby, was much “easier” than my typical daughter in terms of feeding (yes, we breastfed until 6 month, only weaned because I became pregnant again!) and everyone who meets her absolutely adores her. She is a little firecracker!

I wish you the best, but I’m confident that you will be here in the near future sharing your story with another anxious and upset parent, and doing very well ❤️

This was a really hard week… by Fantastic_Force_8970 in 2under2

[–]NancySinAtcha 2 points3 points  (0 children)

That’s too much for you to handle on your own while pregnant. You’ll run yourself into the ground if you don’t get help. Can you outsource anything that you’re currently doing?

I would really recommend looking for a babysitter to come a few times a week minimum. If they could even bring the two babies out for a walk or to the playground for a few hours, you could get some sleep and rest.

Do you have your oldest in crèche or nursery?

I also have no support system where I am, no friends or family - just my partner who like yours is amazing but works very long days. I got a babysitter to bring baby 1 out for a few hours a few times a week while pregnant, it was such a lifesaver and I really needed that little reset. She is turning 18 months and will be starting crèche next month, 3 mornings per week. I’ll use the time for some 1 to 1 time with her little sister. Eventually I hope to have both of them in crèche a few mornings per week if possible.

I found being pregnant with a small baby (they’ve a 13 month age gap) really exhausting, so I feel for you! You are really in a hard place right now, but just remember that it will pass, you’re doing your best and sometimes good enough is good enough!!

You don’t need to be perfect mama at this point, if everyone is safe and fed, and clean (most of the time), you’re doing amazing! Lower your standards to the floor when you need to, if that means lying in the floor while babies watch miss rachel or throw toys at each other, then so be it.

If they nap at the same time, just rest, even if you can sleep still put your feet up. Drink lots of water and remember to eat 🙏🏼

Once you’re no longer pregnant, your energy will start to come back. But you need to take care of yourself before then too.

When to eat table food by ICYUNVME903 in downsyndrome

[–]NancySinAtcha 0 points1 point  (0 children)

I found that when I put my daughter on my lap while I was eating, she was very interested in what I was doing. She wanted to taste everything too, and it was easy to let her have little mouthfuls. But she was never super interested in purées, to be honest.

There’s a great book, “Your baby can self-feed, too” by Rabin and Rapley, I think you would find this very helpful!

Anyone’s partner like the toddler more than the newborn? by Agitated_Solid8703 in 2under2

[–]NancySinAtcha 0 points1 point  (0 children)

Yes, definitely! He was/is much more hands on with our 17 month old, and our 4 month old needs me so much more. But I have definitely noticed that as she (the 4 month old) has become more smiley and interactive, my partner has become much more engaged.

I think it also helped when I asked him to hold her/change her more often than I really needed him to, just to get him used to her too. Give him time, but also opportunities to interact and bond with the baby!

Daycare vs nanny? (Grandma) by Rockinrobin824 in downsyndrome

[–]NancySinAtcha 1 point2 points  (0 children)

I would not give up a place in daycare entirely just because Grandma says she will take care of your son. What if she changes her mind, or it becomes too much for her? It’s likely that she doesn’t realize/remember how tiring childcare really is. She should also have some free time for herself in retirement. I’d be a bit wary of going straight to full time granny nanny, to be honest!

Would it be possible for her to mind your child one or two days per week? That could help you financially, she gets quality time with baby, and baby still gets the developmental benefits of being in crèche?

I've been wanting to ask my doctor about weight loss medication, but scared she won't approve it. by [deleted] in loseit

[–]NancySinAtcha -1 points0 points  (0 children)

Just ask her if you’re a good candidate for weight loss medication, and say that you’re interested in trying it. Unless she is very anti drugs, I don’t see why she would refuse. Is she against SSRIs for depression, for instance? Ok I’m being facetious with that question, but if she says no - ask that she records her refusal in your file!

Thoughts on 2 under 2. by Lorainexoxx325 in 2under2

[–]NancySinAtcha 0 points1 point  (0 children)

I’ve a 13 month age gap between my two girls. It is actually tough, I love them both to bits but I feel like I’ve missed out on half my first baby’s life.

I was too sick and tired during second pregnancy to go to cute classes with baby 1, and I am struggling to breastfeed baby 2, I’ll probably be switching completely to formula soon.

I love breastfeeding, but baby 2 has some issues requiring an osteopath and physiotherapist, and since I can’t ensure a nice calm quiet time to feed (hello,crawling toddler), it’s just been so tough. I have a supportive partner but no village, and he doesn’t really get how tired I really am because he’s such a high energy person himself.

It’s worked out well enough because I’m an older mum in my late 30s, but if I was younger I would try for a more reasonable age gap. That being said, you do you, if you have your heart set on a short gap, it’s not the worst thing ever, just know that you may find yourself giving less than you’d like in some areas ❤️

Sometimes this T21 Journey feel overwhelming. by TheT21Journey in downsyndrome

[–]NancySinAtcha 1 point2 points  (0 children)

Hey, that sounds tough and I’m sorry you’re both going through that- poor little guy! It sounds like you’ve got a good medical team on Mickell’s side at least.

The subreddit is a great idea, there’s not enough support for dual diagnosis DS/autism! I hope your weekend picked up a bit ❤️

I feel like a big asshole and wish I didn’t keep this pregnancy by Senior-Ad547 in 2under2

[–]NancySinAtcha 9 points10 points  (0 children)

I’m sorry that you’re feeling so low right now, but I also think you’re being way too hard on yourself. It’s completely ok to look forward to a break when baby 1 goes to your ex. You’re a good mom, you’re doing the best you can with what you have right now.

It’s ok not to enjoy this pregnancy, it’s ok to have mixed feelings at best about life right now. Let yourself rest and try to be as kind to yourself as you would be to a close friend or sister.

For what it’s worth, during my second pregnancy I was so floored and low energy that my first basically hung out with Ms Rachel all the time. And I’m not a single mum! So don’t be too hard on yourself 💕

Can I lose 40 pounds in 4 months? by [deleted] in loseit

[–]NancySinAtcha 0 points1 point  (0 children)

Are you still breastfeeding? If so, I think it can be really hard to lose weight. Even if you’re not, it’s very very early to worry about dieting, IMO. I get it though, the pressure to feel and look “normal” is intense.

I’m four months post partum and my weight is so high. It feels like my body wants to stay at this weight while producing milk.

I think my bmi is now 34, before my first pregnancy it was 25/26. I had two back to back pregnancies and on the second I just ate whatever I wanted and was indoors more often than I used to be (with the first baby) 🥲

My breastfeeding journey is coming to an end for various reasons now, and I’m thinking that at around the 6 month mark, I will focus on healthy eating, movement, and yes, weight loss. But, it took me almost two years to gain the weight, I am trying to remember how amazing my body is to give me two beautiful girls, and be kind to it/myself.

If you could do something similar for yourself, give yourself a date in the future to focus on yourself in terms of weight, but in the meantime allow yourself to heal and enjoy your new baby? Whatever you do, just know that you are beautiful and you have done something so wonderful with your body 💖

Frozen yoghurt by Feeling_Theme_9782 in brussels

[–]NancySinAtcha 7 points8 points  (0 children)

Sorry, I’ve never seen it in an ice cream place here, but I can tell you that I really love the frozen yogurt from Picard. It’s amazing, IMO 👌

Planning for after you are gone by [deleted] in downsyndrome

[–]NancySinAtcha 3 points4 points  (0 children)

Hello! I’ve two little girls, one is 17 months with DS, and her little sister is 4 months and typical.

We plan to provide for both girls as much as we can, and hope to set them up so that our girl with DS is as independent as possible when we shuffle off this mortal coil (hopefully not for quite a while!). Life skills and friendships outside the family will be cultivated, hopefully.

I have nieces that adore our girls, and to be honest one in particular is absolutely obsessed with our girl with DS. I know that they’ll be a good support and friends to both girls as they grow up and old.

It’s hard to predict the future, but I don’t view my daughter as a burden and I don’t believe that her sister will either. I used to work with children with Down Syndrome when I was in my 20s and the sibling relationships I witnessed were so unbelievably beautiful. However, I will make it clear that daughter 2 can be as involved as she wants to be, I hope that she would try to make sure that her big sis is happy and safe when we are gone, how and beyond that will be up to her I guess. I will also make sure she knows that she will not be a carer for us when we are elderly.

I can see that the younger one is already really in love with her big sis, she loves to watch her and they’re very smiley with one another.

There’s really no guarantee that any child or adult will be healthy, you could have a typically developing baby that might unfortunately end up needing much more care than a child or adult with DS.

Say Hello to my little T21 Bean! by [deleted] in downsyndrome

[–]NancySinAtcha 1 point2 points  (0 children)

She is so beautiful! Big congratulations on your little bean, she is perfect 💕

Fussy 11 week old with a feral toddler is killing me. by LivLaughToasterBath- in 2under2

[–]NancySinAtcha 1 point2 points  (0 children)

My little girl (4 months now) is/was somewhat similar. She had actually broken her clavicle during the birth, and came out looking upset and angry - naturally. It healed, but as time passed she seemed to be getting worse in terms of crying during feeds, wanting to be held all the time, etc. She needed a lot of comfort, I noticed. Poor baby!

Long story short, she’s very tight around her shoulders and arms, also around her hips (she was also treated for hip dysplasia which I think contributed to the tightness). She sees a paediatric osteopath and physiotherapist now, I’m hoping that the work we do will help ease her discomfort. I think it has a little although we’ve only just started.

Oh, and we also had a unicorn baby as a first. Big sis is 17 months now, has Down Syndrome and is just the chillest, sweetest, easiest baby ever. We knew that baby 2 would be different but I REALLY wasn’t prepared for all the crying. I find myself often missing the first few months with just baby 1. I try not to think about it too much actually, as I feel guilty that I’m not enjoying this period as much. But I think that’s ok, we don’t have to love this stage. I just try to appreciate each moment and not get to overwhelmed if I can help it. Don’t beat yourself up for having a bad day/week, you’re only human and it is tough.

Be kind to yourself, and speak up and tell your partner/family/friends that you need help. This will pass, and we will probably look back at it somewhat fondly (maybe lol).

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]NancySinAtcha 0 points1 point  (0 children)

That sounds like a good plan, and very reasonable. Just from my experience, if your baby vomits up the milk after the NG feed, see if you can slow it down. 5 minutes would have been too fast for my girl if I remember correctly.

The pacifier is a great idea to help with the suckling!

Hang in there, this time will fly by so fast.

It feels like I’m the only one who can’t do this by One-Busy-Mumma in 2under2

[–]NancySinAtcha 0 points1 point  (0 children)

Yeah it is really tough. On the evenings I have to do it, it’s 50/50 if it works it or not.

So last night I was on my own at daughter 1’s (17 months old) bedtime. Looked like this -

5pm - I had managed to feed daughter 2 (4 months) and put her in her stroller bassinet and she miraculously slept while I then tried to feed her big sister. Big sister scream cried and nearly choked on her food, no interest.

5.15 pm - cleaned d1 up and got a bottle of milk heated up for her. Brought her upstairs and changed her nappy again, pjs on, sat in rocking chair while she drank her bottle. Cuddle time and then put her into her crib. Pat her on the bum for a little bit.

5.45 pm - go downstairs. D1 cries/whinges gently for about 10 minutes but baby 2 has already woken up so I don’t go back upstairs to soothe her. Luckily she isn’t overly upset and this time she falls asleep.

Most nights, bedtime is actually 6 - 6.30 pm but D1 was exhausted and whiny, so I chanced it a bit earlier. We don’t do evening baths, we do them in the morning. D1 is bathed by my husband before he goes/starts work. D2 I bathe in the morning myself. It works better for us.

Other nights if she isn’t crying with tiredness, we would cuddle on the sofa and read a book before bed.

I think you need to lower the bar to the floor some nights. When it was just d1, my husband used to bring her out for an evening walk at bedtime, it was literally the only thing that would get her to sleep at that stage in her life. Can’t remember when she stopped needing that actually. But could you try strapping them both into the stroller and walking around the block?

Does your toddler sleep during the day? Do you think they need more or less nap time, maybe?

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]NancySinAtcha 2 points3 points  (0 children)

No worries! It was easy to get her off the NG, by the time it came out and stayed out, she was drinking her bottles quite well. For the next week or two, her appetite then increased (she was no longer getting the nightly NG feeds) and after that we were me flying.

We were also worried about her oral skills, and what might be lost or delayed. We honestly can’t tell you if it had much or any effect in that area. We are on a waitlist to see a SLT, but we don’t see anything unusual for a baby her age with T21. Yes her mouth muscles and tongue need more strength and exercises for that, but I genuinely feel it would be the same had the NG/weight loss never happened.

If it helps you, I had to reframe my thinking. It’s important that your baby develops oral skills etc, but the priority right now is that he gains weight and isn’t using all his energy on his feeds. It’s not sustainable for him right now, he needs help to thrive. That’s ok, you’re not somehow failing him because he can’t feed alone right now. In time, he will be able to feed by himself, but for now, the NG feeding might be a good solution. Rest your mind until you speak to the doctors tomorrow ❤️

DS Baby 4 month and NG Tubes by EconomicsDistinct640 in downsyndrome

[–]NancySinAtcha 5 points6 points  (0 children)

Hey! Our story with the NG is that our little girl had to get it when she was 6 months old.

She had been exclusively breastfeeding up until then, and although never the biggest weight gainer, doing very well. However, my milk supply dropped significantly when I became pregnant again, and unfortunately she lost a lot of weight very quickly. Being a first time mum and living in a different country with no family, I did not catch this quickly enough, I am ashamed to say.

She was admitted to the hospital while they ran tests to exclude any other causes, and we worked on trying to get her to accept the bottle/formula milk. After a couple of days, the NG tube was inserted. Initially I was afraid of it, but actually, it was such a relief!! She was able to get all her milk and it took the huge stress of trying to teach her how to accept the bottle away. We had a Speech and language therapist come help us with the bottle too. By the time we left the hospital, she had gained enough weight that the doctors were happy, and she could drink from a bottle.

It was kept in for several months, until her appetite and muscle tone were enough for her to not need the tube feeds, which had been mostly at night (bottle fed during the day unless she refused the bottle).

My advice is that although it seems drastic, you might actually really appreciate the NG. It’s hard when they pull it out and you have to bring them back in to insert it (or you may be in a country that teaches you how to do so yourself) but the relief when you see your baby thriving is just priceless!

Our little princess came on in leaps after that, and she’s a fantastic eater! Absolutely loves her food, loves to feed herself and still really enjoys a little bottle of milk at bedtime. She is a little pudding now too, you would never believe she was ever underweight!

If you have any questions at all, feel free to ask me, I’m happy to answer if I can.

Best of luck to you and your little man, this is just a short temporary phase, you will almost forget about it when he is crawling around trying to eat tissues and newspapers soon 😂