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can anyone give me some advice and help for my 17 month old son with severe cp?
Hi I could give you a story that will take me till next year but I am using my touch phone and its a nightmare typing! I have a very tall 18 month old son who is extremely heavy to hold and when he is stiff its so hardto hold him. He can't sit or stand and his head control is weak, he can't eat very well, can swallow but cant chew or know how to eat just tastes it, I give him pureed food and he has a gastrostomy and had a niseen operationto stop him vomiting as had severe reflux. His vision is getting better and now has glasses and his fits are well controlled for over a year now. I'm struggling at night as he wakes up frequently and goes stiff and I need some advice if anyone has any experience with this? He has melatonin but its not really doing much. It's like he wants to sleep but can't. Also I am always having to hold him nearly all the time does anyone else have this problem? I don't have hardly any equipment either hospital are a nightmare, been playing hell with them as I don't have a bath aid, buggy, car seat nothing apart from a snug seat which is too small for him and can only use as a seat not feeding or anything as there is no tray and his head falls too far back in it he needs something more advanced as his vision is getting better. He can't reach out properly but he does follow his toys and tries to reach out but its so hard doing anything with him with no equipment and I can't enjoy a day out without the struggle of no supportive buggy. I need someone to talk to so anyone who wants to share anything I would love to hear, thanks