He continues to see Angela, his occupational therapist every week and he loves spending the hour or so playing with all the toys and looking at the books. We try and encourage him to use one hand at a time by holding the other one or distracting him and it's a real struggle because his brain gives him all sorts of mixed signals but we hope that in time his bimanual synkinesis can get a bit better so he is able to do simple things like hold a yogurt pot in one hand and a spoon in the other to feed himself.
Reuben's new walking frame arrived a few weeks ago - we had waited ages for it, but apparently all the new ones have been recalled due to a potential problem with the back wheels so for the mean time he is only allowed to use it indoors until they come to fix it in December. He used to enjoy walking across the school playground with his frame to collect Esther from school but he will have to be carried or go in the pram for a while.
Physically he is learning to cope much better with the spinal cast, he can bend down to pick things up from the floor without toppling over and he is more sturdy and a bit less wobbly. He does still fall quite often and due to his neurological condition he doesn't have the reflex to put his hands out to stop himself and often lands straight on his head but it's not as frequent as it used to be which is a relief!
He still continues to wake every hour in the night to be rolled over and legs rubbed, he gets cramp pains at night time from lying on the cast and he has a particularly bad time between about 2-3am where he is awake for about an hour but once he has had his legs rubbed and usually a change of clothes he settles back off to sleep. We continue to struggle with getting nappies to fit over his cast without leaking, so most nights he wakes up with wet clothes and bedding. At the moment he wears a babydry nappy with a pull ups over the top and we tape them to the cast to try and stop them slipping but there are still gaps at the sides which leak.
Reuben really enjoyed bonfire night, we had a few fireworks in the garden and he loved them! He got really excited and laughed so much but couldn't quite make it awake for the big display and fell asleep so missed it but maybe next year he will get to watch it!
Reuben's weight continues along the 0.4th centile curve, he puts on 1-2oz per week. He doesn't have to be weighed every week any more, he goes every 2-4 weeks.
We still wait to hear from Portage who are going to come soon to work with Reuben and help him develop skills and speech through play. The forms have gone through so we're just waiting now.
He was measured for a potty chair last week for when he starts potty training, it will be a while before we even think about doing that but it will be a while before the chair is ready for him and he can get used to it being here before he has to use it. It will be better because he won't be able to use a normal potty or toilet because of the restriction of the cast.
He is slowly gaining a few more words and sounds - 'peppa' is his favourite word at the moment and 'toot toot' for Thomas the Tank Engine, sometimes we hear a whispered Dada in the mornings and he gets very excited when he says Esther. I still await to hear Mummy though, but I keep trying! He will say nana for banana and a funny 'dandandad' for Grandad!
All in all he's doing really well at the moment, and we know that God's strength continues to lift us and enable us to keep going. Please continue to pray for us as a family that we will continue to see Reuben improve
thank you x
(his next hospital appointment should be just before Christmas to have his cast changed and he will see the paediatrician and neurologist in the new year.)
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