Progress report

We really will get some more photos on soon, because there are some crackers!

Theo is doing really well; he is almost sitting up by himself and spends plenty of time on his tummy now. He interacts very well with people and noisy toys and when he laughs you can hear the fast wheeziness through his trachy, so there is no mistaking it.
He has just started tasting baby slops this week; there is no talk of actually weaning him onto food until he has tolerated bolus feeds. And I know of children who have been tube fed for years before weaning so it is more about learning to like tastes than for nutrition.

I have bought a Makaton baby signing book - this is a commonly used form of sign language for children who cannot speak but can hear. It is best when everybody uses it so let us know if you want to learn too. Babies are great at it apparently and its best started young, so Theo is at an ideal age. We do not know how long he will have the tracheotomy so I see it as worth learning so he does have some way of communicating with clarity.

Things are moving on with regards to his discharge. Bit by bit we are receiving equipment from Red Cross etc at home and have realised Theo will need to become a permanent fixture in our lounge. We are getting there with training - still so much to do(boo!) and we now have been allocated a number of Diana nurses/carers who have begun to visit the hospital to do their training too.
We have met the Rainbows Children's Hospice representative who offer some respite services for children with life limiting/threatening illnesses and support services for family members, such as very waterproof shoulders.
I was reassured that Theo's condition was definitely eligible (which was both a relief - we will get help - and very sad).
We have been told that Dr Duke at the Glenfield recommends that Theo cannot tolerate anaesthetic right now so there will be no gastrostomy. That is a shame because the NG tube can be so uncomfortable for him and is much more dangerous in terms of aspiration.

With one of the carers, I took Theo off the ward this afternoon for about 15 minutes. It was a pretty complex exercise to be honest and although it was a delight to be able to give him the excitement he displayed, I cannot imagine it will be so easy by myself. Though I cant wait to try!!

It was also a shock for me, to suddenly be the recipient of so many curious gazes from people. I realised instantly that the practicality of taking Theo out will only be half the difficulty. Maybe in time our pride in Theo will compensate for this but right now when we are both so run down, overwhelmed and scared, it is going to be hard work.