Poorly Tobes!

Poor Toby has had a terrible cold for 10 days now. I went down with it two weeks ago and inevitably I guess Toby developed it about 4 days later. Unfortunately it has gone straight to his chest and he is on his second lot of anti-biotics and steroids to strengthen his breathing and stop the wheeziness. He is still determined to eat though and we have only had one day of resorting to the liquid feed when Toby was coughing and sneezing so much that he couldn't swallow quickly enough before the next sneeze or cough would come and much of the food ended up all over me! He is doing well with eating despite the cold and the Speech and Language Therapists who came to assess his swallow this week (!) were happy that he could continue! Toby did fall asleep half way through his lunch whilst the SLTs were trying to assess him unfortunately and so they are coming back next week to continue and to look at how he might work towards taking liquids orally. We are going to start trying yoghurt and thickened liquids off a spoon and playing with a cup to see how he copes.

Toby's sleep pattern has been even more disturbed than normal and I have had some very early mornings - 1.45am has been the earliest so far. Lucky Tobes can catch up on a bit of sleep during the day but when he's asleep its my chance to catch up on things.

I think that Toby is getting bored. Although he has been unwell this week and may be a little tired and grumpy because of this, Toby has also been shouting and seems quite unsettled in the afternoons, generally when we have run out of things to do. It is really hard to find ways of engaging his attention - he's not really willing to touch items although we do try offering him different textured toys and objects and we hold them against his legs and arms as well as his hands. He still seems to enjoy going out for walks - I think the different sensations of the air and the movements of the buggy give him some stimulation. So we tend to go out twice a day if we can - I'm getting to know the local streets quite well! I guess being bored is quite a good sign for his cognitive functioning and we should see it as improvement but we need to find ways of responding whilst he's wanting stimulation.

The physiotherapist brought Toby a standing frame this week - now we have a monkey and a bee. We need to try and build up to an hour a day. Toby is not overly impressed with this new piece of equipment and shouts and cries loudly as we put him into the frame. He did calm down after about 5 minutes today and we managed 15 minutes in total so not too bad.

A bit red faced and not very happy whilst he's in the frame and rather relieved to be out of it and back on Dad's lap afterwards!

After talking with the mum of a young boy who spent 9 months in the rehab centre we have decided to try it out as this seems the only way to work out if its going to be helpful. The centre have told us that the bed will be available mid October so it looks like we will be off again soon. Martin and I will probably split the week between us and we will bring Toby home each Friday and return to the centre on Sunday evening. I'm hoping that the centre's therapists will be able to help us find ways to reach Toby and to build some kind of communication with him. It would be really good to be able to find a way of playing together again.

The MRI scan was cancelled by the hospital the day before we were due to go - this was fortunate really as they would not have given Toby a general anaesthetic with his wheezy and bubbley chest. We are waiting for a new date to come through - hopefully before we leave for the rehab centre.

The last two weeks have been rather tiring with so many disturbed nights and Toby being a bit more demanding that in previous weeks. Martin managed to find an activity gym on Ebay that didn't depend on lights and music as all the new ones seem to do and Toby does seem to like hitting out at the toys hanging down and the sliding pieces on the bar at the side. It always looks as if he is looking at things but we haven't had any sign that he can actually see anything so far.

Lisa xx