He is quite a different boy now compared to the four years he was tube fed. No more pain and a real cheeky character - he loves to pick up a toy (usually a toy animal) and just carry it round and round the house.
We still worry a lot about his feeding, trying to find ways to slip in calories or teach him to drink, but he is content enough with just the small amount he eats and has no desire to learn to drink. He learnt to eat jellies in the UK which is a great help with getting in fluid and sometimes surprises us by eating something new like in these photos where he's trying ravioli.
It was a relief at paediatric clinic today that although he hasn't gained any weight since December and has lost 2cm in height (that was actually because they measured him standing rather than lying down but it give a better weight to height ration so who cares?) the paediatrician doesn't think he needs a naso-gastric tube or other intervention. He has prescribed some nutrini drink that has 1.5 calories per ml which I think I can mix with weetbix so hopefully that will help.
Isaac turns five in October so his early intervention teacher has started his ORRS application (this is the school funding for children with special needs in NZ). We were talking about his progress at his kindy IEP and once you start thinking about ORRS you suddenly realise just how behind your child is. No toilet training (what a joke he only wees about twice a day anyway as he doesn't drink!) Only uses three words spontaneously to communicate - 'up', 'walk' and' dog', can't recognise his name on the board etc etc. Still he is our cheeky well loved boy - we just think of him as a toddler really.
I know some parents choose not even to read their child's ORRS application - I'm not like that, I want to help write Isaac's just to be sure he gets funding - but it's still tough, even after already doing it for Lily and Noah it's still hard to think about everything your child CAN"T do.
4 comments:
Ben just came in and saw the photo of Isaac and recognised him! He can still remember playing with him all that time ago. I recently came across this link for a straw for children who are not drinkers on another blog belonging to a mum whose daughter has Ds and doesn't drink. It has a float in it and only allows a tiny amount of fluid up at a time. https://www.bionix.com/Pages/SafeStraw.html
She found it on this feeding blog http://cheriandlaura.blogspot.com/ I thought it may be worth a try if you haven't already come across something similar :)
Mel
Loved all the recent UK photos Angela.
It's great that Isaac is trying new foods and hasn't lost any weight. Love the pictures of him feeding himself. Great that he is happier now and able to be his cheeky self.
I can sympathise with ORRS, it's so hard to think about our kids from such a negative perspective but unfortunately necessary to get the funding. I helped write Maia's too. All the best!
Are Issac and Parker related? Parker is also tiny for 5 (37 inches and 32 pounds) but boy can he take down a house in about 2 minutes flat.
oy!
Tammy and Parker
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From the photos you post on your blog, Isaac looks increasingly cute. What a happy smile, those raviolis must be nice.
It's so good seeing him looking so well!
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