Hmm, hunger or teeth?

Either our son is not being fed enough or he is teething! Read the rest of this entry »

Brick Wall

Daniel still continues to be well and so is coming on in his development. He walks around the lounge all the time now as we have plugged his ventilator in to an extension and put it on wheels so he just drags it round. He never wants to sit, it is so funny to watch. He has been pulling himself up on Rob today so it is nice to see him progressing. Read the rest of this entry »

Protected: It’s not what you know, it’s who you are!

Plodding along

Well first of all sorry that it has been a while, to be honest I just haven’t had the energy. The boys are good. Danny has started back on his swedish nose and as we’d hoped he is coping fine with it. Now that the winter is almost over it would be nice to see what our little miracle can really do as he has had no further infections now for roughly 3 weeks which is great. Read the rest of this entry »

Standards is as standards do

After a bit of pneumonia and flu, Danny is now back on form and back to telling everyone to ‘get out’ and ‘get off’. I have tried my best to teach him other words but he seems to like these ones so much. Rob has been trying to teach him ‘bog off’ but Danny thinks that is rude so hasn’t bothered learning these ones. Read the rest of this entry »

Ha ha ha

Dan has been on good form today telling me to ‘get out’ and giving me lots of kisses. Hopefully he is finally getting over the flu. Read the rest of this entry »

Limits

When we first found out about Daniel way back in 2006, we were told that we could expect to be in hospital for 2-10 weeks. We did’t know Daniels airway was floppy granted but why does that give the NHS the right to keep Dan in hospital for 2-10 years. He is as well as he will be for the time being so why does our son have to stay in hospital when he doesn’t need to be there??? Read the rest of this entry »

Access is denied

Dan has been really poorly this week with flu which is ironic as he had the flu jab back in November. Read the rest of this entry »

Blue

Dan Dan is not too great at the moment because he is full of cold again and has a temperature and so has tomas. Both of them are dosed up on Calpol and Nurofen but are grumpy when it wears off. Tom went to bed at five tonight and has pretty much been asleep since although he did wake briefly getting in and out the car when we had to take Dan back to PICU, saying that he was cold and that I should have brought his blanket, bless him. Read the rest of this entry »

Stressed and anxious

Danny is full of cold at the moment which because he is still on anti biotic, he is doing ok with. We have had a super week with him, Dan has been to Nans monday to wednesday and friday he went to uncle freds where he made lots of noise with spoons and pans. Our family have been excellent throughout all this. The dog kept trying to lick him so dan kept smacking him to get him off. Tom use to do that with seven (the dog) too.

Dan finally got his christmas present which was a discovery dome which he seems to love pushing the balls through, and he tries to walk round it. Read the rest of this entry »