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It has been a busy week all round. Danny is going from strength to strength, he is taking more and more steps with support and is trying really hard to pull himself up. He gets very upset if he is not standing, especially if you lay him down. He has learnt the art of getting what he wants by shouting for it. It’s a joy when kids hit this stage because they shout for you as soon as they can’t see you. It’s kinda nice but not when you want to get on with something!!! He has been a real super star and spend a total of 2 hours off his ventilator, some people felt he would never get below a peep of 8but now on a peep of 6 he has proven these people wrong. I hope those people carry on doubting our child because nine time out of ten he does his own thing and he will carry on proving them wrong. Tomorrow he is due to go down to a peep of 5 which is a normal peep however he had his RSV and Flu jab on Friday and has since been unwell, especially yesterday when he had a temperature all day. He was brighter today though although he was coughing alot and so wretched some, in the end we kept him unclamped so his bile output has been more and their was alittle old blood in it today because of the wretching. I have just rang to speak to his nurse and they said he is being a tinker and has dropped his sats to 78% which isn’t like him. These jabs have knocked him off his feet a little me thinks. (more…)

Today has been a very eventful day. Danny’s peep went down to 6 which hasn’t phased him so far. He isn’t tired and for a couple of minutes he was tried on a swedish nose which also didn’t phase him. For those of you that do not know, this is what Danny would have at the end of his trachy should he continue to do well with the reduction of his peep, it would be instead of a ventilator. (more…)

Danny has been a good boy again today, he is still very snotty and bile is pouring out of him more than usual but he stays happy regardless. I couldn’t go in today because Tom’s nan has gone away for the weekend so I spent the day with him which was nice although I did the cleaning. Tom gave me a helping hand!!! Dan has had some water play today but judging by his clothes he was sat in it but I am told that wasn’t the case, he just drowned the floor where he was sitting. I am told he had a great time. (more…)

Danny was a little out of sorts yesterday, his cold has made it so he is working a bit harder at his breathing as his respirations were up a little and he was nasal flaring too. He also had bright yellow bile which is always an indications that he is off colour. I had to keep him unclamped as he kept coughing and wretching. Thankfully he has settled today although he is still very snotty. He was happy in his self but the little monster would not go to sleep. I put him in his pushchair to see if this would help but he just played, kicking his feet together. That boy does everything with his feet!! He finally fell asleep in the car on the way back to the hospital which wasn’t great as I had forgotten his pj’s so had to disturb him so I could change him so he wasn’t too impressed. (more…)

Danny has been a little off colour today, his teeth and his cold probably. He has also been a little wheezy the last couple of days on and off but this isn’t unusual when he has a cold as he gets so many more secretions.

He makes me smile at the moment because he always wants to be on his feet, when we try to sit him down, his legs just lock in the standing position. He is constantly trying to pull himself up, mostly on people. (more…)

Danny has had a happy week, he is doing really well all round. On friday he had his first outing to a restaurant. I had the vegetables as I am a vegetarian and never like the alternative to meat. My cousin was talking to me and said she would have Dan on her knee but he would put his hands in her dinner, to which I replied ‘no he won’t. He hates the feeling of food in his mouth or on his hands’, at which point Danny promptly put his hands in my dinner not once, twice but three times so today when we brought him home, he sat at the table and played with a plate of pasta. This is progress for us. (more…)