Pre-school going well/ new feed not!
Ben is really enjoying pre-school which is great. Can't say it is my idea of fun spending the morning with a load of kids but never mind!
The educational psychologist was very nice and I think she could see that Ben needs quite a bit of help. She saw me showing the staff how to flush his tube and connect him to his feed. The pump alarmed 3 times which was useful. Twice during story time when there was noone available to do anything. ALso when they had their healthy heart time outside he needed help on/off the bike with his tube and supervision as it was at risk of catching. His case goes to panel on the 6th october so we will see what they say.
I am so proud of him and how he is coping with the other children wanting to know about his tube. He is so very patient. He is doing his best to keep up with the others but it is hard as he is so small and is carrying the backpack around. They were all playing hide and seek and he struggled to keep up but he gave it a good go.
They were talking about the apple crumble the children had made and that they were going to all have it at snack time and this little voice said "I like cornflakes". Made my heart bleed.
ben's tube and feeding issues are very much part of our lives and normal to us. it is when you go into these places that you see what his life could be like at 3 and I very much wish it was.
We tried some of the new feed and it didn't go so well. I didn't think that a tiny 4g scoop could make that much difference but it did. Gave him diarrhoea and a lot of pain. Spoke to the dietician and we are down to 1g per feed with 35g of the neocate active. No diarrhoea but not himself. Moving to 2g today so we shall see!
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hi helen
i just read your lastest posts - thanks for posting.
sorry to hear he's having a flare up. It's terrible to hear your child screaming in pain and not bieng able to take it away - worst feeling in the world - when my boys were in terrible pain i felt it was like torture when i couldn't do anything to help, just hold them.
you are doing an amazing job. you are always postive even though you get little sleep and have a lot of worries with your childrens health. you are always posting on sites to help other families in same situation. i get better advice from you than i do from my doctors!!
i'm so glad he's enjoying preschool and it's great that they are being supportive. good luck with the panel - if all goes to plan, will u get a qualified helper or will it be someone you'll have to train to understand ben's needs?
my little one starts preschool on wed and i am very lucky i don't have to worry about equipment or anything. i had a letter saying first session will be cooking cakes to give them to grandparents on fridays session - he won't be able to have the same as the other kids and i hope he doesn't get upset. i guess he has to realise his diet is very different to other childrens.
good luck with the feed - i really hope his body copes with it.
anyway, hope u r ok,
Kx