Hello everyone. I'm a very highly worried dad of a 2.5 year cute, healthy and beautiful daughter. While she was around 1 year, she had started blabbering broken words like "tuh tuh tuh" "wa wa wa" "duh duh duh" "mmmaaa" etc. We thought she was a bit delayed to start saying those words for the age but were still glad she started blabbering at least something. However gradually, she stopped uttering those syllables also. Currently, she is completely mute except for crying. She loves to watch rhymes on a laptop or a tab or even a mobile. She can watch rhymes endlessly even without food or sleep. She can't walk yet, but crawls all over the place.
When we try to make her walk, her steps are very rigid with feet far apart and she can't sustain more than 5-10 steps. Then she kneels down and won't get up again unless forced. And then the same thing repeats again. When it comes to eating or sleeping, she is perfectly normal. She is an absolutely patient, tolerant and cooperative child. Where other children of her age might create a ruckus for trivial things, my daughter doesn't budge - let's say if we turn off her laptop, she's just fine. She won't cry or insist us to turn it back on; rather she'll just crawl over to another place and find her own source of entertainment or just sit calm in the same place.
Her sitting is also called as 'W' sitting by the doctors and we always ensure she sits normally as any other child would sit. But she goes to the W sitting by default. Her hearing is just perfect and there are no issues as confirmed by doctors. However she won't respond to most of our calls except when it's about food or entertainment. She normally responds to her name but on rare occasions, that also is missing. She enjoys the rhymes and specific lullabies sung by her grandfather, me, her mother or grandmother. She laughs loudly and smiles with pleasure at such things.
But that is it. She won't respond or don't seem to understand anything else. She doesn't respond to instructions or calls or requests or commands or shoutings or pleadings or whistling or clapping etc. She only understands the language of entertainment, food and lullabies. She holds our hands or fingers and waves them when she's happy. She loves getting cuddled, kissed, carried in arms, travel in a lift, going out and outdoors. The only way she communicates with us for any need such as food or entertainment or sleep is by crying in a specific pattern.
Another observation is that my daughter can't drink water or any liquid while sitting straight. She can't sip water through a sipper or drink from a glass. We have to lay her down on our lap, tilt her head a little and then pour water into her mouth. Lastly, my daughter doesn't play with things. She just picks up things and drops/topples them (not even throw). Very recently she started playing with our chair and tries to push it all around the living area in a crawling position.
What did we do for our daughter so far:
As soon as we realized that she has developmental delay and muscular dystrophy when our daughter was just about 1, we enrolled her for daily physiotherapy (1 hour), weekly occupational therapy and speech therapy sessions (30 mins each). We know that the OT and ST are insufficient but that is because we do not have the time over the weekdays due to jobs. The daily PT is also possible thanks to her grandparents but they can't take her to all therapies daily due to their age factor and also because they can't carry and lift her for long periods. Her inability to walk is a major hindrance for all of us in planning of activities where we might have to carry her. There's a limit to where we can use her pram.
The PT doctor says that our daughter has improved exponentially and that she will definitely walk very soon. I'm almost convinced with that statement because I can see that my daughter is really trying hard and giving her best to walk with the help of support. She can currently stand still without support for about 30 seconds but wobbles a lot while standing due to imbalance.
As parents and grandparents, we all are yearning desperately for our daughter to say something, start speaking and be normal. She is my first-born and I'm extremely worried about her. It's a very miserable position that we all are in and I absolutely have no idea what can I do to get my daughter out of this misery. Any known solution to this or any advice from any parent who has had a very similar or exact situation, please guide me. Highly appreciate any help or support anyone can provide. Thank you!