Author Archive

Turbulence

Thursday, September 25th, 2008

Danny Ben has had a turbulent time over the last couple of weeks. After a week of being poorly and me pulling my hair out and the fact no one seemed to have a clue what was wrong with Dan, he went for a CT Scan. The doctors and us as his parents had theories of what was wrong but that became only the half of it. (more…)

2 year old AKA Danny Ben

Monday, September 8th, 2008

Danny Ben has turned into a gorgeous laid back little boy which I whole heartedly have to admit he gets from his father. Although Rob would say when I find him I’ll let him know!!! Danny has been walking now for a few months and now gallops to the washer and the cooker when they beep as a matter of urgency. He is soo funny because I never see him get up so fast as I do when these appliances are beeping. He is so smiley all the time and gives exactly the same cheesy grin that Tom does. He is such a pleasure to have and both Rob and I feel soo lucky and proud that he is ours as he has continued to do so well despite the medical profession predicting he wouldn’t. (more…)

Danny’s first day in the garden

Saturday, April 26th, 2008

Sorry for the lack of writing recently, we never seem to get anytime because by the time we have taken Danny back to the hospital and got Tommy into bed, it’s late and I am so tired. Danny is still doing soo well, it feels like someone will pinch me and I’ll wake up at anytime.Tom is doing superbly too with his pooing on the potty so both of them are doing well for a change. Tom still gets ill though all the time bacause he is always run down. (more…)

Cruising Along

Wednesday, April 16th, 2008

Dan Dan is doing really well at the moment, he has had a running nose and something dodgy is going on with his finger nails but apart from that he is good. He is getting around his environment well so hopefully it won’t be long before he is walking. He is spending an hour and a half a off his ventilator a day and having no problems. He is somewhat miffed when we put him back on the ventilator so much so he trys to pull the whole thing off, trachy included!!! (more…)

Amazing

Thursday, March 27th, 2008

Danny is doing really well at the moment, he is so happy and cheeky and he never ever sits still for more than 5 seconds. He is quite the little walker at the moment. Rob has been off over easter which has been nice. I have put things in place so that Dan can walk from me to Rob and vice versa. He is loving it although he has had a few tumbles but after a little cry he back on his feet wanting to go everywhere. I love seeing him so active because it means he is making the most of being at home. (more…)

Brick Wall

Monday, March 17th, 2008

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. (more…)

Standards is as standards do

Friday, February 22nd, 2008

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. (more…)

Ha ha ha

Wednesday, February 6th, 2008

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. (more…)

Limits

Tuesday, February 5th, 2008

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??? (more…)

Access is denied

Saturday, February 2nd, 2008

Dan has been really poorly this week with flu which is ironic as he had the flu jab back in November. (more…)