I guess we are a bit frightened and discouraged to remove the
bottle again as it didn´t succeed last time. He was by then, as you
remember, in a very bad mood and we all (we, You and his doctor) agreed
not to continue.
We are also not sure if he in in "a good weight situation" to try it out again. This spring he has had a lot of colds and has been vomiting a lot.
On the other hand, a dramatic change might be just what he needs.
We find it is a hard decision to make...
Kindly Bo and Sofia
We are also not sure if he in in "a good weight situation" to try it out again. This spring he has had a lot of colds and has been vomiting a lot.
On the other hand, a dramatic change might be just what he needs.
We find it is a hard decision to make...
Kindly Bo and Sofia
I am very content with B's progress, he is fully sustaining himself for 7 month now without the tube and gaining weight and growing!! This is super!
I find one can relax now for some month and give him a "timeout".
If he still will hardly accept any solids or mashy food by the end of the summer, we can discuss if a course in Graz might be beneficial. But lets postpone the decision still abit, because I think that a lot will still come by itself.
We will close the ticket in end of april , so please let us know if you have any more questions.
Kindly Marguerite & Sabine and the NoTubeTeam
You write you are content with Benjamins progress. We would say there has hardly not been any progress since we first contacted you. He drinks with his bottle as he has always done. He did not depend on his tube when we contacted you. We contacted you to get help with Benjamin to eat more and to eat solids and mashy food. He still doesn´t. The reason he gains weight is we give him a high-energy-formula. His weight is now 8500, same as in the beginning of this year. So we really don´t understand what you mean writing you are content with Benjamins progress!
You write "This is super!" Well, we don´t think so. Yes, super if you compare to tube dependency but not when it comes to Benjamin. In 7 months there has not been much of a change at all...
Until the last days. A few times the last days Benjamin has actually tastes some liquids! We dipped his dummy in fish soup and he slowly put the dummy in his mouth himself- and did not vomit! We have also tried some other liquids with varying results. He seems to prefer milk-based liquids and salt more than sweet (but he also seemed curious to taste ice-cream).
We understand you want to close the ticket now, but since we actually have seen some progress with Benjamin this last couple of days we want to ask if you can still have the ticket open for a time to give support and advice to handle Benjamins new step forward. He is so brave daring to taste some food. How do we handle this and how do we continue?
Kindly Bo and Sofia
Of course we can keep the ticket open for another month, but after that we will suggest to close it or offer the option to take an AFTERCARE for as long as you wish.
I know parents are more critical and I am obstinately positive, I suppose if I were not, I would not be able to do my job!
Benjamin is a special child when it comes down to development.
It is positive and not to be taken for granted that he has not only sustained himself without the tube but has also gained weight with only milk, I know on his very selective nutrition.
The problem is not a medical one, but a mind-related and motivation-related and perception and taste related one.
Of course there would be some changes if you just dramatically change your feeding habits, like removing his bottle and changing to a sippy or normal cup. Or not offering any formula for the whole day. I know such suggestions sound drastic and definietly would be associated with some weight loss, but the problem must be seen in combinason with his very unusual and speciic development.
I suggest therefor to discuss and make a decision if you both feel that you want to try a completely new´handling of him or just wait untill he makes some new changes, like you describe he has fortunately done lately.
Kindly MDS