It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Wednesday, 13 May 2009

So far so good - ?!

Well its been a week and a half and he is still doing well. He was weighed yesterday and as put on 100grams which is good. Food wise he is eating but the fluids aren't so good. So the tube may go back down for fluids only.

A bit of a bummer but the last thing we want is for him to get dehydrated. We have booked ourselves a little holiday to Lincolnshire so looking forward to that and we have just had grandma, Auntie Lisa and April to stay for the weekend - which was great. Was sad when they went home though!!

Oh and I passed my theory test on Saturday!!! one step closer to Independence !!

Thursday, 7 May 2009

Yay !! Ethans NG Tube is out!

Well, what can I say. I think Ethan has had a bit of a growth spurt. And he has been eating so well that we decided that if he pulled out his ng tube we would leave it out.

He pulled it out last Sunday and so far he is ok. He is eating well, but the fluid intake is not great. So we are getting him weighed tomorrow and will take it from there. Not sure what we will do if he has lost weight as he was previously getting one bolus milk feed and one bolus water feed.

Will keep you posted - but I'm such a proud mummy. Last time we did this Ethan was very poorly from the lack of food etc so it is one step at a time.

The other thing I wanted to say, is thank you to everyone who has commented and supported us throughout the last month and last two years. We greatly appreciate everyone who thinks of us and your words and kindness mean alot.

When I can figure it out I will post new photos! I promise.