He is currently at 120% ratio of weight to height

Zack is enjoying  a few days with both mummy and daddy this week. Dan has got some time off work so we are getting to do lots of fun family things, like mowing the lawn and cleaning the house. 


Only joking, we just did a bit of that in between Dan experiencing a day in the life of Linzi and Zack. 


We went to our dietician appointment today. This includes measuring and weighing the Pants. Zack continues to put weight on and has grown in height. All good stuff so we carry on as we are. Any more fast weight increasing and someone will be a right old porky pig. He is currently at 120% ratio of weight to height which means tubby. He needs more stretching and less widening but who cares, he'll catch up soon enough.


We went swimming this afternoon. Zack enjoyed his swim support ring thing. He was more bothered about looking at everything than us pulling him round the pool. Dan enjoyed taking him swimming but not as much as last time as whilst we were there Zack had a few of his infantile spasms, which also caused Dan to go into worry mode.


He has had quite a few today (Zack's spasms not Dan's worries). I think we may be giving the consultant a call just to see what he thinks. We aren't sure if the 2mls of Sodium Valproate Zack was on was just keeping an edge on them or if he needs a new drug. It's so hard to tell.


I have been having a look at a few sites about tube feeding children and in particular weaning kids off being tube fed. There is a place in Austria that specialise in weaning children, known as Graz


They do it by reducing the amount of tube feeds that a child gets so that they start to experience hunger and thirst. They also allow kids to play with food rather than forcing them to eat. 


They let the child naturally request the food. They have a very high success rate but I think a lot of these children are not necessarily kids who have disabilities such as the brain injury Zack has, they seem to have a bit more motivation to reach for food and toys. 


Zack doesn't do any of that (yet) so I am not sure how it would work for him. However there is no doubt that Zack can be motivated by thirst and hunger. When he had his PEG fitted and he came back from the operation, he was so thirsty that Dan gave him a gauze with water and he sucked it dry. 


I just think that our NHS don't have the encouragement or the time to focus on getting children weaned off feeding tubes. They seem to see them as solving a problem for a child that can't eat. I think we need to take a new approach to trying to encourage Zack to feed as I am pretty sure the problem now is not because he struggles with his swallowing. 

Comments

oleyfriends said…
Hi Linzi,

I saw your blog and wanted to share some additional resources on weaning from tube feeding we have found. Go to: http://www.oley.org/tubetalks.html, and scroll down to the bottom of the page, to a section called "Weaning From Tube Feeding."

There are tests that feeding centers can do to see whether or not swallowing is a problem for Zack.

We mostly offer information and peer support to families like yours with a member on home tube or IV feeding. Check out our other information at www.oley.org. Everything is offered free of charge.

Best of luck,

Roslyn Dahl
The Oley Foundation
dahlr@mail.amc.edu
www.oley.org
Thank you for the info, I have taken a quick look and it looks a great site. I will have a good read of it in due course. But many thanks for telling me about it I had never heard about the Oley Foundation.

Linzi

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