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Has anyone had a similar journey?

3 replies

RebeccaTee · 06/02/2025 12:11

Hi All!
I have a 2 year old (26 months to be exact). She is honestly my life. However, since she's been six months old she began to get behind with her development. She struggled to sit unaided until she was 11 months, she always was very active rolling around and commando crawling but she didn't properly crawl until she was about 13 months. She has a physio who has given her a medical walker which helps her walk around (she's great at pulling herself up and standing) but she's still unable to walk without the walker. She babbles so much and has maybe said a few words but not properly talking. She has a pediatrician and obviously has GDD. She's got a speech therapist now so hopefully we're going to support her to the best of her ability. She is very engaging and has always known her name etc. We're still waiting on genetic testing which I've been so anxious about. The pediatrician said if it's anything that she thinks may come up it's more likely to be silver Russel syndrome than anything else, as she is tiny for her age (still wears 12-18 months clothes) but I've googled it and they are super tiny. I wouldn't mind that- as they apparently can live a normal independent life but other conditions such as Prader Willi syndrome absolutely scare me. The pediatrician mentioned this but she said it's unlikely because of her characteristics and just how she examined her (she never had issues with sucking) and I had a very smooth pregnancy with natural labour so we're just surprised that it's happened this way. I was up all last night googling, worried about the worst... I will always love her but I just want her to be OK. Please help if anyone has had/knows of any similar experiences, as I feel so alone. :(.

OP posts:
Lcfmmm · 22/10/2025 22:45

@RebeccaTee Hello, I just stumbled across your post. My DD is delayed and only now able to get herself into a seated position at 11 months. She has just started physio but she’s very tiny in 3-6 months clothes. She even still fits in some 0-3. How are things now?x

RebeccaTee · 22/10/2025 23:01

Lcfmmm · 22/10/2025 22:45

@RebeccaTee Hello, I just stumbled across your post. My DD is delayed and only now able to get herself into a seated position at 11 months. She has just started physio but she’s very tiny in 3-6 months clothes. She even still fits in some 0-3. How are things now?x

Hey!
Aww bless her! Yes mine was a similar size when she was 11 months!
Glad that your daughter has managed to get to get into a seating position. :)
My daughter will be 3 in December. She's still behind but is progressing so well. She walks independently (even though she is wobbly). I have also lost count have how many words she has.
Her genetics were normal. She still has small stature so they're going to do a few more tests to check for growth disorders etc but she is in 2-3 clothes, some I have to roll up lol.
It's hard seeing other children her age doing more but I'm focusing on her journey and she's progressing. She does have low muscle tone and hyper mobility and I found that activities like swimming really helped build her muscle.
I'm sure little girl will make lots of progress too and physio will be a great help. :)

OP posts:
Lcfmmm · 22/10/2025 23:12

@RebeccaTee Thank you for updating. She sounds amazing! It’s great to hear she’s walking independently and that she has progressed. Physio has recommended swimming to us. Also has confirmed she has hyper mobility in her ankles, wrists and hips. She’s always been quite unsettled but I don’t know if it’s pain or frustration. Could be a mixture of both. Thank you

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