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My Hero

Today Ethan had his weekly visit from the portage worker. For those of you that don't know what a portage worker is, a portage worker works with children to help develop skills that the child doesn't have. Each week Clare works with Ethan to help develop his skills through activities. The emphasis at the moment is on his hands. They work together with toys and messy activities to encourage Ethan to use his hands, practising opening them and holding and dropping objects. Ethan has just started to open his hands and leaving them open for prolonged periods. This is a major milestone for Ethan. Being able to open his hands and begin to touch and hold objects will open up a world of experiences for Ethan. This simple action is one we take for granted. As Ethan is unable to move around himself he is in the same positions all the time. We reposition him regularly so that he doesn't get uncomfortable but when he's in that position he is unable to entertain himself. I often worry that he might get bored or frustrated even that he is unable to independently play. I play with Ethan a lot and always encourage him to hold toys. Now he can open his hands he is able to hold and grasp toys easier and will now with help let go of toys. We practise with the shape sorters by dropping the shapes into the sorter. Ethan doesn't have control over his arms so we practice lifting his arms to his mouth. This is something Ethan loves! He loves to chew and suck on his hands and I would love for him to one day be able to do this independently.

Encouraging Ethans development is very important to me. Every little milestone is massive for us and as they are very far between it really is a big celebration everytime he does something even if he does it once and then doesn't ever repeat it! I think this is something that you miss out on with a child who develops "normally". With Ethan I really get to appreciate every little thing about him. The way he looks at me (another new skill) and smiles, the way he watches my mouth when I talk, the way he snuggles into me, the way he loves to be touched, how he loves to have his nappy changed, the excitement on his face when he listens to music, how his face lights up when he watches lights but most of all how much he takes in. You take for granted things like the first time your child holds a toy, or when they look at you and smile, the first time they blow you a kiss or sit up unaided. For me every little thing is special and I get to really treasure every moment I share with my special boy. I melt inside everytime Ethan looks at me and holds my gaze then slowly smiles, which is so rewarding to see that despite all he's been through he is such a happy little man.

Every day we do physio with Ethan. We stretch his legs and arms, we play on his tummy to strengthen his neck, we lie him on his side to bring his arms round, we do long sitting to encourage straight legs and we encourage his eye contact with tracking toys. We have also started a program with BIBIC. This program starts with an all over body massage massaging his arms, legs, hands, neck and back. Ethan also does exercises on a physio ball and practising grabbing toys trying to bring his arms together. He practices rolling and creeping along the physio mat. Each program takes half an hour each to complete but has been so worth it. In just three months of starting the BIBIC program Ethan's head control has improved, his eye contact has improved and most of all his hands are open 80 per cent of the time. It just goes to show that all the hard work Ethan does every day really pays off. Ethan never complains about doing his exercises. He knows what to do in all of the exercises

and is getting stronger at them every time.

People always ask me "so what's he doing??" I reply and say the same as before. This could get me down but it doesn't. My little man is so strong and I will always love him for just being him. He makes me proud every day with his strength and determination. Yes I'd love him to walk and run and be independent but why get down about the things he can't do?? Instead I celebrate what he can do and that is make me one proud mummy!!!


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