Anyone with experience of hypotonia and global developmental delay in babies

[Worriedmama2four]

Please help. I’m super concerned of my 5 month old baby boy. He’s been diagnosed with hypotonia, global developmental delay. I had a normal vaginal delivery for reference. His eye contact is off to me like it looks like he’s looking at my forehead or hair instead of my eyes. It was difficult to make him smile but that seems like it’s improved. He doesnt really respond to loud noise like he won’t turn his head where the noise is coming from. He loves to stare at the ceiling fan and tv when they’re off. We already got his hearing checked twice and vision checked once. He has a head lag still but seems like it’s a little better, and has rolled a few times on accident but won’t intentionally do it, can’t sit up. He just doesn’t seem interested us unless we come up to him and make him smile. When it comes to toys he’s reaching for them now. He will bat at a toy and hold it and bring it to his mouth. We already started with PT/OT/ST. They rated him really low like 3 to 5 percentiles for gross and fine motor milestones. Speech says he has oral motor dysfunction and said he didn’t have a suck reflex but I thought that became voluntary at 4ish months anyways?
I’m worried about autism or an intellectual disability. He was diagnosed with global developmental delay and the internet says that diagnosis expires at age 5. We seen a neurologist who ordered whole exome sequencing, a genetic test so we’re waiting on those results and he said we may move forward with an MRI after.
Anyone in a similar boat or have experienced with this that is ahead of us. I’m just wondering what to expect.

It is really hard when all you want is answers, but unfortunately, no-one here is going to be able to tell you what to expect, I’m afraid.

I don’t know if you are in the UK, but some DC keep the GDD diagnosis beyond 5 in the UK.

DS1 is a teen now. He has hypotonia in his core trunk, head and neck. It is sometimes called axial hypotonia. He also has hypertonia of his limbs, particularly lower limbs. Before DS I didn’t realise having both was possible, but apparently it is and isn’t rare. He has a complex mix of physical, psychological, medical and developmental needs. Although he doesn’t have autism. He doesn’t have an LD diagnosis either because his IQ is above 70, though he can’t put that into practice in the real world.