Got a whole new thing to fret about now

[needmorecoffee]

DD has severe quad CP but she manages to eat mashed up food. We have to feed her about 5 or 6 times a day because after half an hour of having mashed stuff spooned into her mouth she gets fed up and clamps her jaws shut. At 3 she weighs 20 pounds which is very light despite me adding butter to everything and mashing advocados.
So she'll have brekkie from 8 till 9 (she has her first lot of meds then too. From waking to being ready to go out takes one and a half hours), mashed bananan and cream about 11, sweet pot and beans about 3, something else about 6 and last meal about 9pm. In between she'll have 4 or 5 bottles of formula milk.
I do feel like I spend all day feeding her but it takes so long and everything has to be mashed up.
Works ok at the moment but what happens when she goes to school? Brekkie will have to be 6.30am as they pick her up at 8 (why do SN schools start so darn early. They know how long a SN child takes to get ready and give meds to). They have their lunch at 12 and she'll be home exhausted at 4.30. I just don't know how I'll get enough food into her. She'll probably be asleep by 7 so there doesn't seem enough time to get all the calories in. And she'll be bigger and need more calories too. If I don't manage they'll start talking G-Tubes again and no way is my daughter having one of those things unless its life/death.
So, anyone here feeding a child like dd and at school?

[yurt1]

Will they give her some breakfast at school as well? DS1's SLD/PMLD school are very good about things surrounding feeding and food. I'd talk to them and see if you can get them to do some of the work in feeding her. DS1's first teacher for example spent a year patiently getting him to eat (via single baked beans until we got to full meals iyswim).

They also don't need to pick her up at 8- see if you can change so she's the last picked up. DS1 isn't picked up until 8.40am

[hercules1]

You will be able to arrange with them for them to feed her at times in the day.

[needmorecoffee]

She is picked up last Yrut (only 2 kids in her taxi). She just does 2 mornings a week at the mo. It takes over an hour to negotiate the city traffic to the school which is 7 miles away. So she's late every morning anyway. Mad traffic which is a whole new rant.

Do I need to get additional snack times put into her statement or will the school do it cos I ask?

[2shoeswhizzbangwoosh]

when dd started sn nursery I found they had LOTS of healthy snacks. In nursery luch was a 11.30 then she moved up to school and lunch was at 12 and now at secondry it is 12.30.
I think you will need to be strong. and send in lots of snacks. insist that she has these during the day. I know what you mean as well about tube feeding as the school kept saying how skinny dd was. then I looked at an old photo of me as a kid and found I was as well
Could she have a high calorie drink during the day?

[needmorecoffee]

We've sent in bananas but finding mashable soft snacks is hard work. So far she refuses to drink in school (we send in her bottle). She only lets dh give her her bottle.
Its not a big deal yet although she arrives back at 1pm too hungry to do anything except yell. Too hungry to eat! With a walkie-talkie child you can hand them choccy buttons or a sandwhich but dd is hard.
I think I'll go into the school next week (7 mile hilly bike ride. waaaaah) and talk to them. I'm hoping they been here before.

[hercules1]

The school should do it because you ask.

[needmorecoffee]

feeling a tad better now. I'd got myself intoa tizz that dd would end up with a tube because what she needs foodwise isn't compatible with the school day. That is not a good reason for a G-tube!
We had to fend off the tube when she was little. After her steroid treatment for seizures she didn't eat for months properly then caught norwalk at the hospital then had terrible tummy pains which we eventaully discoeverd was the reflux meds. After all that she had a psychological thing about eating and its taken me two slow years to get her to eat while fending off the docs who bleat she is too small/light/should have a tube.
Don't want it all ruined.

[2shoeswhizzbangwoosh]

when she drinks does she have trouble controlling her swollowing?

[yurt1]

Do talk to the school. They were wonderful with ds1. When he started there he ate 5 items of food (nibbled at them). Most of those were biscuits. They really did put in time daily for a year to sort it. I know you're not keen on special schools- but really a good one will excel at this sort of thing (at mainstream they have 15 mintues to eat and that's it- and have to eat the same as everyone else or it's 'not fair on the other kids' ds1 routinely used to arrive home from ms without having eaten anything at all all day.)

[needmorecoffee]

No trouble drinking 2shoes. Unless she starts laughing. She's just funny about the bottle. Wont drink from it outside the house and inside only DH can feed her with it.