I am having an ongoing battle with Oscar and I fear it is one that I am never going to win.
My battle is not with Oscar as such, but more with Oscar’s weight, or lack of it.
Oscar is underweight for his age and size and it is a big worry for us.
Although Oscar eats and does put on weight he then either has a growth spurt or gets ill and seems to lose the weight he has just put on.
Oscar was only 2lb 12oz when he was born so he was not destined to be a big child.
He is under the care of the dietician and has special milk (which he does not like), powder that we put in his food that provides extra calories, plus I put butter and cream in his food where possible.
He eats some complete rubbish, which I would prefer him not too, but he needs to get the calories,so what choice do I have?
The main reason I am desperate to get the weight on him is not only for the sake of his health (although in general his health is quite good) but if he doesn’t put weight on at some point he may need to have a gastrostomy and I want to avoid this at all costs.
For those of you who don’t know, a gastrostomy is basically a tube fitted directly into a child’s stomach where parents can then ‘feed’ their child a special liquid food through the tube which then goes directly into the child’s stomach.
I know there will be those of you reading this whose child will have had this procedure done and some in the same situation as me.
The reasons I want to avoid Oscar having this procedure is it means surgery, I have heard stories of children who have had this procedure done and then will not eat anything orally as well. It is also another step away from ‘normality’ (whatever that is) for Oscar.
Oscar has a blended diet and enjoys his food especially chocolate (don’t we all). Eating as a family should be an enjoyable experience but sometimes it can be a bit stressful, especially when Oscar hasn’t eaten as much as we would have liked, but everyone has off days. It also takes a long time to feed Oscar. I sometimes feel the day is taken up with feeding him as he cannot feed himself, but I must persevere.
I think that the dietician puts fear in me with their graphs on acceptable weight gain.
On the graphs for a ‘normal’ child, Oscar is well below the scale. He is following his own line of weight gain but not the one that they would like. On the graph for children with cerebral palsy, Oscar is above the bottom line, meaning he is just out of the ‘danger’ zone. I have never been so happy that Oscar managed to get above a line on a graph.
So, for now I will keep on battling with Oscar and his weight but I hope that this a fight I will never ever lose.
Do you fundraise for equipment for your child?