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Feeding therapy in Graz
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Photogalery Our thanks go to... |
What has happened
since my first report? Update (May 1st, 2005) |
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Often I was confronted by other parents with a comment
like "My child doesn't want to eat, either", and
on some days with my spirits low I was tempted to ask
where the little one had its tube... Only few know, that some babies are orally so traumatised by intubation, ng-tube, reflux or other invasive medical procedures, that they "decide" to not let anything near their face or mouth anymore. For these kids a g-tube is a life saving step. For the short term this tube is definitely beneficial, but in the long term run we all wish our kids to be able to learn the great fun and satisfaction associated with eating. At the same time as parents we are aware of the fact, that "not-eating" and as a consequence thereof missing information in a babies mouth and missing development of oral motor skills has a negative impact on fine motor skills as well and can lead to secondary additional developmental delays.
Due to a stay on the intensive care unit shortly after
birth (including intubation und ng-tube)
Gabriel had developed an oral aversion.
For 1,5 years we tried to overcome his aversion with
daily exercises. We started with a baby, that hated to
be even touched in the face and in August 2004 had a
toddler, whom we were allowed to feed about 2 teaspoons
of babyfood with a lot of distraction, jubilation and
putting up a fuss. We realised it could and with high
probability would still take years to get him to eat, if
we didn't decide for something completely new. When we
heard about the feeding therapy in Graz, we wrote Prof.
Dunitz-Scheer an email describing our situation and got
a space for therapy already 6 weeks later! |
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On a Sunday, September 12th 2004, we drove to the
Children's Clinic in Graz, full of hope it would and
fear it wouldn't work.
We were warmly welcomed and after filling out some forms Gabriel and his dad were moving in their room (a so called mother-child room, that would be rather a daddy-child room for the next weeks ;o), while I drove with Julian (Gabriel's baby brother) to an apartment of friends of ours. Thank you so much again, Ela and Heinz!!! It made everything so much easier!
The next day started with a long talk with the
doctors during their ward round, an informal meeting
of the whole team (doctors, nurses, parents and
kids) and finally the first "Spieleessen". Gabriel
cautiously entered the room, and almost couldn't
believe to see all those interesting things standing
around on the floor (!!). But after his first
disbelieve he concentrated fully and with enthusiasm
on his oh so important "job": he mushed around and
played and in no time smudged himself from head to
toe with mashed potato, "Nutella", yoghurt, "Milchschnitte"
and
some other, no more identifiable edibles.
In addition to the "Spieleessen" Gabriel also got
occupational therapy, physical therapy and speech
therapy... obviously not 3 sessions a day, that
would be too much, but on some days he had at least
two sessions.
For the following next three days Gabriel's tube
feeds were dramatically
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shortened. On day four he got nothing more than a bit of sugar water (glucose), and even that only when needed. And not to forget, giving sugar water is specially "mean" as it fuels hunger due to a fast rise and in consequence thereof fast decrease of the blood sugar level. Corresponding to Gabriel's growing
hunger, that pretty fast got to a point where it was
simply unbearable, Gabriel's mood (and therefore also
our mood) went down to zero. Friday morning, on day 5,
we had a toddler lying on the floor screaming out of
hunger and complete desperation. When would he finally
start eating, when would finally this emotional torture
to watch the own child being so hopeless and desperate
be over?? |
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One week after our arrival in Graz the
long waited for miracle finally happened: |
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Maybe it was simply our new and honestly felt perspective "whatever happens, happens; we don't care anymore, we can't help it anyway..." that made Gabriel try the food - actually I am 100% certain it was. The next few days were similiar - once or twice a day he cautiously licked on some food (and always at a point when we had given up already). We were happy about every tiny little thing, but when would he finally eat enough to get relief from this terrible hunger? On a Wednesday, 10 days after our
arrival in Graz, Gabriel suddendly and completely out of
the blue started to put a cake his daddy had eaten to
his mouth and swallowed and took more and swallowed and
took
more... After that he also gave a "Milchschnitte" a try
and swallowed. |
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food goes, closing his mouth around the spoon, and swallowing!! The next morning Gabriel ate a pudding and some baby cereals.
We were euphoric, merry like little children... We decided to go home hoping that a change of places would help. We got instructions from the doctors how to carry on: for 5 days per week Gabriel would get sugar water (though of course more than he got in Graz, to be on the safe side as at home we of course were not under constant medical attention anymore) and for 2 days per week he was supposed to get his usual tube feedings again. After being home for two weeks
Gabriel starting tasting food again, hooorrahh! Three
days later he stopped... we were devastated, completely
desperate with our nerves all on edge. It just couldn't
go on and on this way! The pressure on our family was
simply too much and was almost tearing us apart! But exactly taking our pressure off Gabriel, letting him do whatever he wanted and giving him absolut and final control, was the road to success.... AND a combination of everything that's out there: homeopathy, Bach flowers, and cranio-sacral therapy. A few days later Gabriel started tasting food again with his little tongue. We barely could keep done our happiness and hardly could keep ourselves out of the process... NO pressure, NO pressure I was telling myself all the time... And we did it, we really kept ourself back and DID put NO pressure whatsoever on Gabriel, even when on some days he didn't want to taste any food. The next day he did again. |
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After two days of tasting food the two days full tube feedings were on the schedule. We were oh! so nervous that he would stop the tasting food again... NO, he didn't, on the contrary, having more energy even let him taste the food more eagerly. Especially at breakfast and at dinner he tried jam and the different soft cheeses. Therefore we decided together with Dr. Dunitz-Scheer to keep his tube feedings up. For 5 weeks nothing changed,
besides the fact that we got our happy little boy back (YEEAAHHH!!).
AND, he didn't stop tasting food, he had more and more
fun with it, helped daddy putting butter on a piece of
toast and having simply fun with food and eating (!!). Once a day I also offered him different kind of puddings and baby food to try with a spoon. In all these 5 weeks he did nothing more than cautiously licking a tiny bit from the spoon, sometimes he didn't even do that (but he still had fun!). |
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The baby food I gave him to play I then diluted with some water and fed him the "real food" through his tube (see the photograph!) So Gabriel would have real food in his system and when burping he would have the taste of real food in his mouth. I am very certain that this was also an important part in our success story. On a very memorable tuesday, November 30th 2004, EVERYTHING changed. Instead of only licking the spoon with the (10% fat!, but unbelievable delicious by the way!) "Stracciatella yoghurt" he allowed me to put part of the spoon in his mouth! And he decided that this was yummy and started eating the yoghurt. It took him a whole hour for about 40 g of yoghurt, but who cares???!!! That same evening he ate from my plate quite an amount of apple sauce, he joined in in our eating!!! Every day the amount of food got more, every day Gabriel's eating got faster. Only 7 days (!) later he ate 4 of this Stracciatella yoghurts a day, which amounts to almost 900 kcal! December 8th marks the day we fed him the last time through his tube, about 2 months after we had come home from Graz. |
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Right now he still gets some water through his tube at night
as he can't drink yet. Today is Sunday, December 19th 2004.
Gabriel hasn't been tubefed now for already 2 full weeks and
is doing great! He only likes "his" Stracciatella yoghurt so far, but accepts without any problems that we mix in some applesauce or baby cereals. He additionally sits at the table at meal times and tastes and licks our food, and likes most of it quite a bit. When I tell him "time for eating, honey!" he jumps up from even the most |
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beloved toy, squeals in delight and comes to the table as
fast as he can. There is nothing better in the world than being able to feed your own child, and your child even loves it! |
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We take the opportunity to heartily thank.. Prof. Marguerite Dunitz-Scheer, a
wonderfully human and competent doctor, originator and
director Family Müller from Switzerland and Family
from Israel, with whom we together went through the
program... Dr. Brigitte Schneider, who always shows
so much sympathy in Gabriel's well being, and for her ...and our families, who are ALWAYS there for us!!! |
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Spieleessen in Graz - zu Beginn war das Wetter noch so warm, dass wir es auf dem Balkon veranstalten konnten!
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