Tube weaning begins...
We've had our first appointment at the feeding clinic and met our wonderful therapist, Eoin. Although we haven't "begun", our first homework was to complete a food diary for four days or so. Getting my thinking head on and wanting to involve Tom as much as possible (I am a very pro-life-skills kind of parent!), I quickly thought of photographs. Tom loves this idea, and has been taking before and after photos of everything he eats. Add to that no tube feed last night (I gave myself a night off), he's done amazingly well today.
Cheesy chips for lunch, and roast dinner tonight. The big news was that he tried pork for the first time. This photo sees him put a very small piece in his mouth (can you see the concentration, fear and determination in that face?). Best news? He liked it!! As you can see in the next photo!
Cheesy chips for lunch, and roast dinner tonight. The big news was that he tried pork for the first time. This photo sees him put a very small piece in his mouth (can you see the concentration, fear and determination in that face?). Best news? He liked it!! As you can see in the next photo!
A work in progress
Not only is this an appropriate heading for the building of this page (many have recently been asking me how I feed Tom, so I need to get things up quickly rather than perfectly), but it is very apt for the process of feeding a child like Tom.
Life with a tube-fed child is a series of ups and downs, in my experience at least. Tom does not feel hunger or satiation in a normal or reliable way, so it is up to me (or his carer) to assess when, what and how much he "eats". As the picture shows, Tom does eat. Sometimes, in his own way, and never enough to keep him healthy. It is an incredible achievement for him to be making and eating his own sandwiches, and enjoying doing so. His favourite birthday present last year was a sandwich maker that allows him to shape his bread - he loves it!! Funky sandwich maker it also gives him some good physiotherapy as he pushes the roller up and down!
Life with a tube-fed child is a series of ups and downs, in my experience at least. Tom does not feel hunger or satiation in a normal or reliable way, so it is up to me (or his carer) to assess when, what and how much he "eats". As the picture shows, Tom does eat. Sometimes, in his own way, and never enough to keep him healthy. It is an incredible achievement for him to be making and eating his own sandwiches, and enjoying doing so. His favourite birthday present last year was a sandwich maker that allows him to shape his bread - he loves it!! Funky sandwich maker it also gives him some good physiotherapy as he pushes the roller up and down!
How I started!
Not scientifically! Tom had been on Neocate (an elemental feed), and the dieticians were at a loss to explain his vomiting. As a result we had removed any possible allergens. No good. At all. In fact, he started asking to drink regular cow's milk, which was wonderful to see. Having checked with his paediatrician to see if there were any medical reasons to stop him having normal food, I took the plunge.
Any professional will advise STRONGLY to try one food at a time, wait a few days to see if there are any reactions before adding, or trying a new food.
I was tired, exhausted from seeing my little boy really ill, and my dietician was furious with my decision to try a different way. So I forged ahead.
I started by buying stage 1 baby foods. I simply mixed them with normal milk and put them through the tube. The milk was simply to thin the mixture down enough to go through. Please understand that calories at this point were not my concern. I wanted to see if the daily vomiting would stop. If my little boy would get just a little bit better.
Four days later, no more vomiting.
And a kid who was looking more alive than he had for months.
There was no looking back, and Tom has not had chemical formula since. This was November 2006.
Any professional will advise STRONGLY to try one food at a time, wait a few days to see if there are any reactions before adding, or trying a new food.
I was tired, exhausted from seeing my little boy really ill, and my dietician was furious with my decision to try a different way. So I forged ahead.
I started by buying stage 1 baby foods. I simply mixed them with normal milk and put them through the tube. The milk was simply to thin the mixture down enough to go through. Please understand that calories at this point were not my concern. I wanted to see if the daily vomiting would stop. If my little boy would get just a little bit better.
Four days later, no more vomiting.
And a kid who was looking more alive than he had for months.
There was no looking back, and Tom has not had chemical formula since. This was November 2006.
Today's feed!
I'm going to go into more detail, but for now, for those who just want to get going, this is what I do.
I blend Tom's food in a Vitamix. I cannot state strongly enough how amazing this blender is, nor how helpful the company have been. With a doctor's note, they offer medical discounts, so do contact them!
Tom's feed gives about 1700ml, at approximately 1 cal per ml. I check it about once a year with nutritiondata.com as things change over time.
3 cups whole milk
2 cups fruit juice
2 tbsp vegetable oil
1/4 cup honey
1/4 cup mixed seeds OR nuts
1/2 cup dry soy mince OR 2 eggs OR 3 ounces meat/fish
2 cups frozen veg OR equivalent fresh veg
This recipe is taken initially from kidswithtubes Save this link, print it, read it cover to cover!!! But the homemade formula recipe is on page 13.
If you input exactly what you put into the blend into nutritiondata, you will get a full run-down of nutrients, and will be able to tweak what you need. For example, I noticed that Tom's blend was a little low in certain amino acids. This website was able to reccommend what foods to find these in. In this case, cheese and yoghurt could fill the gap. I was thrilled to find this as these were the only foods Tom would eat at the time (still some of his favourite). Otherwise, I would have added yoghurt to the mix.
Happy blending!!!
I blend Tom's food in a Vitamix. I cannot state strongly enough how amazing this blender is, nor how helpful the company have been. With a doctor's note, they offer medical discounts, so do contact them!
Tom's feed gives about 1700ml, at approximately 1 cal per ml. I check it about once a year with nutritiondata.com as things change over time.
3 cups whole milk
2 cups fruit juice
2 tbsp vegetable oil
1/4 cup honey
1/4 cup mixed seeds OR nuts
1/2 cup dry soy mince OR 2 eggs OR 3 ounces meat/fish
2 cups frozen veg OR equivalent fresh veg
This recipe is taken initially from kidswithtubes Save this link, print it, read it cover to cover!!! But the homemade formula recipe is on page 13.
If you input exactly what you put into the blend into nutritiondata, you will get a full run-down of nutrients, and will be able to tweak what you need. For example, I noticed that Tom's blend was a little low in certain amino acids. This website was able to reccommend what foods to find these in. In this case, cheese and yoghurt could fill the gap. I was thrilled to find this as these were the only foods Tom would eat at the time (still some of his favourite). Otherwise, I would have added yoghurt to the mix.
Happy blending!!!