Hair cut, food and sleep

Toby had his hair cut today! With short hair his cheeks look really chubby but he looks so grown up - not my little baby anymore. A hairdresser friend of my sister Jess, offered to come round and cut Toby's hair after seeing the pictures of my two long haired lads on the blog last week. Toby shouted a bit through the experience but we got there in the end. Mat has refused to have his hair cut yet - there is still a week to go before school starts and he's holding out as long as possible.

Toby's eating is continuing to improve. We shocked the team at the Child Development Centre last week when we told them that he was eating 3 meals a day. The Speech and Language Therapist had not been able to make a time to assess Toby's swallow until September. They had not expected us to move beyond swiping small amounts of pureed food on Toby's lips until this assessment. We explained that Toby was setting the pace and that when he began to communicate his desire for more food we could not ignore this first piece of communication. I had spent time with the S&LT in Hospital and felt relatively confident in moving forward so we have progressed and Toby is doing very well. His gag reflex is active and he coughs and clears any little bits of food that catch him out but this doesn't happen very often. He is eating so well that we have, today, stopped the special liquid feed that he has been on for the past couple of months and replaced it with a smaller amount of ordinary baby formula milk - formula rather than cow's milk to make sure he gets all the vitamins and minerals he needs. I did speak with the dietitian before making this change and we have reduced the amount to that which he would normally have needed as an 18 month old toddler. Toby managed to put on over 0.5 kilo (about 1 lb) in the last week so we need to slow down his weight gain and the baby formula has a less calories than the complete enteral feed. So now Tobes is eating porridge or weetabix with fruit for breakfast and I am making little meals for his lunch and tea - he is managing quite lumpy textures now as long as they are fairly soft.

It has been really good to be able to feed Toby real food again and he is beginning to tell us that he is hungry - he starts shouting about half-an-hour before meal times and then goes very quiet and starts opening his mouth as we put him in his chair. He is definitely learning this routine! We are quite restricted by his mealtimes now though and have only a couple of hours when we can go out as we need to be able to put him in his special chair for each meal. For the moment we can manage this routine as the furthest we go is a walk round the park or to a friend's house only 5 minutes away.

Sleep is still variable but still much better that it was in hospital. Toby is still waking around 4am each morning but he is fairly content to lie in his bed until 6 and I pop in and out to reposition him and check he's ok. We have put this black and white mobile above Toby's bed as one of the neurologists said that we should continue to stimulate his eye sight as it is possible that his brain may be able to make new connections and, in her experience, some children with similar brain injuries as Toby have regained some sight in the 12 months after the illness. She said she cannot predict whether this will happen for Toby but it is a small possibility. So we will wait and see.

15 second video of Toby in bed - he's not asleep!

We still can't tell whether Toby recognises us at all. He will calm if we cuddle him if he's a bit distressed but we haven't been able to establish any kind of two way communication yet. We are beginning to recognise Toby's different shouts but whether he is able to take in anything about his home or us is difficult to tell. He has done really well since he was discharged only 3.5 weeks ago but it is still upsetting that he hasn't shown any sign of knowing us since the night before he fitted 22 weeks ago. We keep on hoping that he has some sense that we are with him.

Lisa