Tube weaning Annika

Wow! We have done so much in less than 2 weeks. Annika's last tube feed was last Sunday 18th October and she's maintaining her weight. She's constantly drinking either custard, milky stuff or juices. Always messy and enjoying every minute of it!!! It's Thursday 22nd October and they are talking of taking Annika's mic-key button out next Monday. Very nervous!! Is she drinking and eating enough! Crazy!!, as this is why we came to Graz but I didn't think Annika would be ready to have her tube removed so soon. Just shows Annika was so ready for this and we all just needed to shown how.



What has happened so far...


1st day: Monday 12th October - first day at the kinderklinik


We met all the staff at a meeting, 5th floor kinderklinik. Building 30.


There are 4 other children on the tube weaning program, all boys, with Annika being the only girl.


3 are inpatient at the hospital; 1 from Graz itself, 1 from Ireland and the other is from Holland (has been tube weaned before but because of lack of weight gain the authorities got involved and they were forced to put the NG-tube back into their son)


The other boy is from India and his family are also staying at the Häuserl im wald but at the Hirschenhof guest house which is about a 8 minute walk away. They also have a 6 year old daughter and Bella has made fast friends with her. They are so alike and love the same things; Barbie, make-up and being silly.


Annika is weighed and measured today: 12kgs (with nappy on, all other weigh ins are without her nappy!) and she is 83cms long

Annika normally has 500mls nutrini, 150mls yoghurt and 400mls of water a day. Tonight we are instructed to drop this to only 400mls of nutrini while Annika is asleep. We also start giving Annika her heart medication orally also, which is only 1ml of flecainide twice daily and she takes this easily!! Yay. We also have our first spielessen (play picnic) today. This is usually the only time the families all get together, it is a time for the child to play with all kinds of food with no pressure to eat or to do anything with the food.



2nd day: Tuesday 13th October 2009 - Annika weighs 11.66kgs.

Annika is to be given only 300mls of nutrini while she is asleep tonight. We are to explain that the tube is not working anymore if Annika asks or is upset but she never does either.

11am: First therapy today is Ergotherapie (occupational therapy) with Bettina and we talk through what Annika is capable of now.

12noon: Spielessen where Annika gets covered head to toe in chocolate, have to change her clothes

1pm: Logopedics (speech language therapy) with Elisabeth - more talk about how Annika will take food into her mouth but spit it out again.

Very cold today. Took the #7 tram into town and had a hot dog at the hauptplatz (town square). Can even buy a beer (bier) with your hot dog if you want. To the information centre and bought Bella some new winter boots. Back to our hotel on the #1 tram and a steep walk up the hill to our hotel.



3rd day: Wednesday 14th October - Annika weighs 11.42kgs.

Annika is to be given 300mls of nutrini tonight.

10am: PT (physiotherapy) with Eva. Told to give Annika more autonomy, she must walk around the hospital. NO stroller except for outside. Also to have a hidden food corner with a selectionof food for Annika (and Bella) to take from when they like. Away from our prying eyes so that she can eat away from us if she wants. Also to get her drink bottles with lots of different things to try; soup, juices and smoothies, all as high in calories as possible, to see which ones she prefers.

11am: speech language therapy - tried lots of different things with food to see how well Annika coped. Also blowing bubbles.

12noon: spielsessen - Annika licked custard from my finger

1pm: occupational therapy - worked on climbing on the climbing frame, finding objects in a bath-tub full of uncooked lentils.

More shopping at the university Billa and trudged back up the hill through the forest to our hotel room. Tired so had tea at the restaurant of Häuserl im Wald. Yummy venison for us and flipper for Bella (fish and chips).



4th day: Thursday 15th October - Annika weighs 11.1kgs

Annika is to have only 200mls nutrini tonight.

10am: occupational therapy (ERGO) - more digging in lentils and climbing

11am: speech language therapy (LOGO) - tried different textures and tastes with Annika today.

(Bella and I stayed at the Haus Sonne during the therapies and then went for a tiki tour through the woods and met Gareth and Annika at the spielessen at lunch time)

12noon: spielessen - Annika is drinking some apple juice and even swallowing some of it!! 1pm: Saw the Doctors (Marguerite and Peter) who suggested putting different high caloried liquids in bottles for Annika. Soup! Smoothies! Everyone is very happy with Annika though. She's drinking, lots of spilling. But drinking!!

2pm: Music session with Beggete. Great fun. Lots of instruments to pay with.

Into town on the tram. To the Open Liberty (childrens opera) near the opera house. Several doctors in the show with the children. Annika is constantly wet all the time now. Constantly drinking from a bottle.

Bella and Gareth played at the lovely playground while I got stuff for Annika's tea. Very tired. Dinner at Häuserl im Wald again tonight. Tried Annika on pumpkin creme soup (kürbiscremesuppe).

Must stop. Off to town now and will write more hopefully tomorrow!

The photos below show Gareth, Bella and Annika outside the Hofbackerei (very nice!! wish I could bring you all here for a coffee or tea and some baking. Yummy.) Ballons are from a bookshop opening around the corner.


The next photo shows the hills near our hotel, Häuserl im wald, which had snow on it last week. Luckily it has warmed up again.


Next photo is Annika in a occupational therapy session with Bettina.


Last photo is of the kinderklinik where the therapies and play picnic is held. Hospitals seem to be the same everywhere, hot and all.