Our first two weeks at home

It is such a relief to be home. It is hard to bring Toby home to his bedroom and to his toys and to all the things that remind us of his first year before the meningitis but to be together again as a family under one roof and to be able to do very ordinary things like cleaning and using our own bathroom is wonderful. We're unpacked and beginning to find places for the extra equipment and supplies that we now need to support Toby at home. We had already faced the trauma of removing his cot from his bedroom some weeks ago when we made the decision to have an electric bed installed, similar to the one he used in hospital, as this made it possible for me to lie next to him on the bed and for the bed to be tilted when he was asleep during a feed time.


Toby has slept fairly well since we arrived home, generally falling asleep around 7.30pm and sleeping through until around 2-3am. Not sure why he's waking regularly so early each morning - wondering if he's had enough sleep at that point given that he's not physically active during the day. He also has no time cues as he can't see or hear. Over the last few nights Toby has been fairly content to stay in bed awake at this time - he shouts a bit and sucks his fingers but is not distressed so after initially checking that he's ok and repositioning him, I go back to bed and pop back and forth if his shouting gets a bit loud and more demanding. I do wonder if he's hungry but he does have a feed at 10pm so he should be ok. He goes back off to sleep again around 7.30am after his morning feed and stays asleep for a couple of hours before getting up for the day. Unfortunately we don't go back to sleep along with him so our day is rather long at the moment.

This photo shows how much more flexible Toby is since the shunt was inserted on 22nd July. Toby is so much calmer and able to move his arms, legs and head so much more since this surgery, we just hope that he will not suffer the complications that can accompany shunts such as infections and blockages - he has got to have some good luck at some point because nothing else has gone his way yet.

The biggest achievement since we came home is Toby's eating!!! He's doing really well taking solid food orally again. We had periodically tried him with very small amounts of pureed fruit or savoury food just swiped across his lips - his success was variable and we had had some scarey moments when he had choked and then vomited everywhere on a few occasions. Toby becomes very distressed when he vomits as he seems to find it very difficult to clear the fluid from his throat and so we have been given a portable suction machine to keep at home just in case we have a problem. Over the last week however, Toby has gone from strength to strength with his swallow and eating. We started with applying strongly flavoured lip balm numerous times each day - he began sucking his bottom lip and opening his mouth like a baby bird when he smelt the fruity flavour.



Since then we have progressed to porridge in the morning and then some dinner in the afternoon - only half a small jar of baby puree and some fruit puree at this point but this is so encouraging I am reading Annabel Karmel again to start getting ready to make him some good home cooked meals.

He must wonder what has happened to his food and milk over the last 5 months - it must be strange to be fed directly into your stomach.



We have had numerous appointments this week and last with nurses, health visitors, physio, occupational and speech and lang therapist, sensory impairment team members, dietitian and portage. Also waiting to receive report from the residential rehab centre who assessed Tobes on 31st July and were very positive in their belief that they had much to offer him. We plan to visit the centre on 2nd Sept to try to decide whether splitting the family up again and moving Toby to another unfamiliar environment will be beneficial at this stage - it may be more useful at a later date when the progress we are making at home has reached a plateau.



Lisa
13 Aug 08