Yay!! Annika is tube free.
On Tuesday 27th October Annika's feeding tube was removed. Of course with anything we wonder if we are doing the right thing and hope we haven’t rushed into removing the tube too soon. Annika seems to be doing so well without it but I don’t think our medical people in New Zealand would have agreed with us.
I'll keep writing what happened in between Annika becoming tube free as I know some of you who have tube fed children will won't to know exactly what happened. Forgive me though if I don't get there though, time just gets sucked away in hospitals.
Day 11: Thursday 22nd October 2009 – Annika weighs 10.8kgs
10am: ERGO (occupational therapy) with Bettina – suggestions are to get Annika to lean on both arms, like a push-up. She needs to develop more muscles in her upper arms.
11am: LOGO (speech language therapy) with Elisabeth – talk to Elisabeth about how long it will take before Annika becomes less messy (and spill less) when drinking. And of course as in anything she said this will take time. A doctor from Orange County hospital watched in on the therapy, they also have a tube weaning program run over 3 weeks. They apparently use Chinese herbs to help induce hunger and thereby get children eating.
12noon: spielessen – there are always new faces at the play picnics. Some families come once a week or come to meet Prof. Dunitz-Scheer. Today there is a family from Poland.
The doctors are still very happy with Annika. We have Nitya, Jah’s sister, for the afternoon. It’s great that Bella has someone her own age here. We tram and walk back up the hill to our hotel, with some groceries and Annika’s flecainide. We set up the laptop so that the girls can watch a Barbie movie (all girls seem to love Barbie). Forgot to say that it had rained this whole time and poor Natya and her dad have to walk back to their hotel (Hirschenhof) which is about an 8 minute walk.
Annika is drinking Nutrini in the morning and at night, we have run out of nutrini and borrow a few bottles from the hospital. Feels like we’re cheating somehow by using the special high calorie drink instead of other food. Will have ask the doctors what they think.
Day 12: Friday 23rd October 2009 – Annika weighs 10.82kgs
We were able to fluff around this morning and have a late breakfast.
11am: PT (physiotherapy) with Eva – cancelled as Annika is doing fine
12noon: spielessen – Annika was very confident around food wanting to try different things.
I write some more blog while Gareth takes Annika into town to see if her glasses are ready. Bella and I meet up with him later and see Annika’s new quirky Austrian made glasses. Hopefully they last until we get back to New Zealand at least. We look into hiring a car for the weekend (Euro 175 for 3 days). Monday 26th October is also a holiday in Austria and is their national day. We walk back through the hauptplatz where the emergency and armed services seem to be having a display on. Bella has great look through an army armoured vehicle and an ambulance (Bella seems the only one interested in the ambulance whereas you can’t get into the Polizei (police) display of riot gear … for all the people around). We meet up with Jah, Nitya and family at the jet ski!? I presume the jet ski is for the many lakes around the country but assumed it was a snow mobile until I got closer. All the kids clamber on board to pretend they’re driving.
We go to the Höf backerei and discover a harpist busking on the corner (not something you’d find at home) and it was very atmospheric listening to it among the old buildings. Both girls loved the harp.
We then took the camera to a repair shop as I had dropped it on Sunday and it no longer zooms in for photos. Luckily for us it still focuses as the repair shop said it would take a week to get a part to fix it and that we might as well wait until we are back in New Zealand again. They didn’t even charge us to look at the camera! Printed some instant photos in the shop ourselves (took like 4 mintues to print 10 photos) and then looked in a map shop and trammed back to the hotel for tea very tired.
Friday, October 30, 2009
Monday, October 26, 2009
Day 8: Monday 19th October 2009 – Annika weighs 10.84kgs
NO MORE TUBE FEEDS.
Only ½ hour session for PT (physiotherapy) today. Annika and I go off to the eye clinic (sehschule) to get Annika’s eyes checked. It’s already 10:20am and we are supposed to be at our next therapy session at 11am. It’s 10:40am before they call me (and yes some of them speak English but you can tell they are not comfortable doing it and misunderstandings are constant and frustrating – Man I wish I spoke German) and I get the third degree as to why Annika needs her eyes checked. ‘It’s been nearly a year since her last check and we don’t just want to use her old script in case it’s changed. Yes, she needs glasses in the next few weeks and we can’t just leave her without them. No, I didn’t bring her script with us (but I wish I had now!!). And no, I can’t contact anyone in New Zealand for the script, it’s 11am here but 10pm at home!! The time difference is terrible for ringing anyone during office hours in New Zealand.’
Anyway, Annika ends up with 3 lots of eye drops in her eyes which have to be put in 20mins apart. So finally at 12noon the Dr looks at Annika’s eyes for all of 3 mins. She then wants to see Annika’s old glasses anyway before writing the script for them. I drop them off the next day. I really didn’t think getting her eyes checked would have been that big a deal but silly me. The test ends up costing Euro $31.10 and it takes nearly as long to pay the bill as to get the eye test done.
After all that we miss our therapy session for ERGO – occupational therapy, but we are only a few minutes late to the spielessen. Annika was very interested in the custard today.
We are asked to wait for Prof . Marguerite who is very happy with Annika and they are convinced that she is swallowing lots of the juices, soups … that we keep pouring into bottles, even though she seems to wear most of the liquids at times.
Missed another therapy session and a music session because of our talk to Prof. Marguerite. I am very grumpy and poor Gareth gets the brunt of it. I’m quite stressed about how well Annika is doing and am not convinced that she is drinking as well as they think.
Off to the Billa (supermarket) for more food and juices etc for Annika to try, it’s now becoming a daily trip. Trudged all the way up the hill to our hotel.
Day 9: Tuesday 20th October 2009 – Annika weighs 10.86kgs
11am: Bella and I head to town while Gareth and Annika go to the therapies today. In town Bella and I find an English bookshop and the Body shop, after some retail therapy we head back to the hospital for the spielessen. Annika tries some other food and textures today.
12noon: spielessen – Annika is very interested today and gets up and wanders around the floor to some other food to try. Annika is weighed at the start of every spielessen and today her weight is holding!!! OK the doctors are right and Annika is swallowing more than I realised. WOW, this is working!
1:30pm: Music with Beggett (don’t know how to spell her name). Great fun. Food and music together at the same time. Yay. Very relaxed and mellow.
2pm: Pick up the script for Annika’s glasses and spend ½ an hour paying for them. Gareth had to wait downstairs with Annika as Bella and I had to go upstairs to pay the bill. You have a different last name are you Annika’s mother (yes and it’s a good thing I don’t speak German at that point in time!!!) They put Gareth’s name on the bill in the end as it was obviously too complicated to have a different name on there. But I got them, I asked to pay by credit card and of course it caused a lot of confusion for them. How were they going to reconcile the payment as now the bill and the payment had different surnames… I think that’s what they said anyway as neither spoke English.
We then spend the rest of the afternoon in town trying to find glasses to fit Annika. We also have the same problem in New Zealand of finding glass frames small enough to fit Annika. We find a glass shop right opposite the Hof backerei in the end and he’ll do it all for about Euro $88. Cheap and quirky glasses and 2 days yay!!
Very tired we head back to Hauserl im Wald for tea. Bella doesn’t feel well so I take her back to the hotel (actually I didn’t feel too good either). Gareth stayed and finished his tea with Annika. Next thing Bella is vomiting and feeling much better. I spend the night vomiting and take another day to recover. Kids can be so resilient. Gareth is OK but feels quite nauseous. Luckily Annika is fine and it skipped her completely.
Day 10: Wednesday 21st October 2009 – Annika weighs 10.84kgs.
Yay, Annika is maintaining her weight.
I still feel awful so I get to sleep in while Gareth takes the girls up to the hospital.
10am: Swimming with Eva and all the other children, the girls had a ball
11am: PT cancelled – Eva says Annika is fine and doesn’t need it.
12noon: spielessen – Annika apparently makes a circuit of the room. Annika then sat near another baby and held onto a cup of yoghurt. When the baby tried to take the yoghurt from Annika, Annika said “No, no, no. Don’t” with her finger wagging and everything (arrived just after this so missed seeing it all). Annika’s new favourite food, custard! She drunk it from a little plastic cup at the picnic.
1pm: ERGO (occupational therapy) with Bettina, working on posting and leaning over (so Annika has to hold herself up)
2pm: Meet up with the doctors. They bring us in together with Jai’s parents as they feel that both children are at the same stage. They are very happy with how both of the children are going and would like to remove their Mic-key buttons next week before they go home!! What! I have to get my head around the idea first. The whole point of coming to Graz was to wean Annika from her tube but I hadn’t thought we would be looking at removing her Mic-key button for several months. Luckily Jai’s parents have lots of questions too. The rational to removing the Mic-key button (partly anyway) is so that they can stitch the stomach closed if it doesn’t close by itself within 2 days. The stomach wall is supposed to mostly close within a few hours of the button being removed. But I’ve also heard horrible stories where this hasn’t happened and the stomach acid then leaks out of the hole causing scarring. It’s then been months before anything is done about it. Apparently Graz has also heard of this happening and that is why they try to remove the button or G-tube before you leave the clinic. Anyway we have until next week to decide whether we remove Annika’s button.
3pm: LOGO (speech language therapy) with Elisabeth – she suggests we get different cups for Annika to try, instead of the bottles we have been using from juices etc. Hopefully she’ll learn to drink from a tippee cup or something similar. Amazing how far we have moved in such a short time from a few days ago.
While Gareth takes Annika to LOGO and Bella spends the afternoon playing with Nitya (Jai’s sister) I go and drop off the script for Annika’s heart medication, flecainide. We normally give this to Annika down the tube and therefore in New Zealand they prepare a solution for us that needs to be kept in the fridge and lasts only one month. We therefore had to get a new lot of flecainide while here in Austria. Luckily Annika has started swallowing her flecainide solution (all 1ml, twice daily) since we started the program. So the poor chemist had to break up the 100mg tablets into 20mg lots of powder which we can then mix into juice or custard to give Annika. There was lots of tsk, tsking and I’m sure some ^#$% in the back room of the Apotheke (pharmacy). The next day we ended up picking up 97 individual little folded up bits of paper with 20mgs of flecainide inside. It must have taken him forever to fold up all those pieces of paper. Cost Euro $30. I don’t think they would have done that in New Zealand somehow.
Annika had had a busy day and fell asleep in her stroller on the walk back to the Haus sonne. She has been very tired since starting the program, from lack of food as well as all the therapy too.
Annika and a chocolate drink in a bottle
Hot Dog stand at the hauptplatz. Yummy. 
Annika with Bettina in occupational therapy.
Video of Bella and Annika but I don't know how to turn the picture around. Will try to figure it out another time.
NO MORE TUBE FEEDS.
Only ½ hour session for PT (physiotherapy) today. Annika and I go off to the eye clinic (sehschule) to get Annika’s eyes checked. It’s already 10:20am and we are supposed to be at our next therapy session at 11am. It’s 10:40am before they call me (and yes some of them speak English but you can tell they are not comfortable doing it and misunderstandings are constant and frustrating – Man I wish I spoke German) and I get the third degree as to why Annika needs her eyes checked. ‘It’s been nearly a year since her last check and we don’t just want to use her old script in case it’s changed. Yes, she needs glasses in the next few weeks and we can’t just leave her without them. No, I didn’t bring her script with us (but I wish I had now!!). And no, I can’t contact anyone in New Zealand for the script, it’s 11am here but 10pm at home!! The time difference is terrible for ringing anyone during office hours in New Zealand.’
Anyway, Annika ends up with 3 lots of eye drops in her eyes which have to be put in 20mins apart. So finally at 12noon the Dr looks at Annika’s eyes for all of 3 mins. She then wants to see Annika’s old glasses anyway before writing the script for them. I drop them off the next day. I really didn’t think getting her eyes checked would have been that big a deal but silly me. The test ends up costing Euro $31.10 and it takes nearly as long to pay the bill as to get the eye test done.
After all that we miss our therapy session for ERGO – occupational therapy, but we are only a few minutes late to the spielessen. Annika was very interested in the custard today.
We are asked to wait for Prof . Marguerite who is very happy with Annika and they are convinced that she is swallowing lots of the juices, soups … that we keep pouring into bottles, even though she seems to wear most of the liquids at times.
Missed another therapy session and a music session because of our talk to Prof. Marguerite. I am very grumpy and poor Gareth gets the brunt of it. I’m quite stressed about how well Annika is doing and am not convinced that she is drinking as well as they think.
Off to the Billa (supermarket) for more food and juices etc for Annika to try, it’s now becoming a daily trip. Trudged all the way up the hill to our hotel.
Day 9: Tuesday 20th October 2009 – Annika weighs 10.86kgs
11am: Bella and I head to town while Gareth and Annika go to the therapies today. In town Bella and I find an English bookshop and the Body shop, after some retail therapy we head back to the hospital for the spielessen. Annika tries some other food and textures today.
12noon: spielessen – Annika is very interested today and gets up and wanders around the floor to some other food to try. Annika is weighed at the start of every spielessen and today her weight is holding!!! OK the doctors are right and Annika is swallowing more than I realised. WOW, this is working!
1:30pm: Music with Beggett (don’t know how to spell her name). Great fun. Food and music together at the same time. Yay. Very relaxed and mellow.
2pm: Pick up the script for Annika’s glasses and spend ½ an hour paying for them. Gareth had to wait downstairs with Annika as Bella and I had to go upstairs to pay the bill. You have a different last name are you Annika’s mother (yes and it’s a good thing I don’t speak German at that point in time!!!) They put Gareth’s name on the bill in the end as it was obviously too complicated to have a different name on there. But I got them, I asked to pay by credit card and of course it caused a lot of confusion for them. How were they going to reconcile the payment as now the bill and the payment had different surnames… I think that’s what they said anyway as neither spoke English.
We then spend the rest of the afternoon in town trying to find glasses to fit Annika. We also have the same problem in New Zealand of finding glass frames small enough to fit Annika. We find a glass shop right opposite the Hof backerei in the end and he’ll do it all for about Euro $88. Cheap and quirky glasses and 2 days yay!!
Very tired we head back to Hauserl im Wald for tea. Bella doesn’t feel well so I take her back to the hotel (actually I didn’t feel too good either). Gareth stayed and finished his tea with Annika. Next thing Bella is vomiting and feeling much better. I spend the night vomiting and take another day to recover. Kids can be so resilient. Gareth is OK but feels quite nauseous. Luckily Annika is fine and it skipped her completely.
Day 10: Wednesday 21st October 2009 – Annika weighs 10.84kgs.
Yay, Annika is maintaining her weight.
I still feel awful so I get to sleep in while Gareth takes the girls up to the hospital.
10am: Swimming with Eva and all the other children, the girls had a ball
11am: PT cancelled – Eva says Annika is fine and doesn’t need it.
12noon: spielessen – Annika apparently makes a circuit of the room. Annika then sat near another baby and held onto a cup of yoghurt. When the baby tried to take the yoghurt from Annika, Annika said “No, no, no. Don’t” with her finger wagging and everything (arrived just after this so missed seeing it all). Annika’s new favourite food, custard! She drunk it from a little plastic cup at the picnic.
1pm: ERGO (occupational therapy) with Bettina, working on posting and leaning over (so Annika has to hold herself up)
2pm: Meet up with the doctors. They bring us in together with Jai’s parents as they feel that both children are at the same stage. They are very happy with how both of the children are going and would like to remove their Mic-key buttons next week before they go home!! What! I have to get my head around the idea first. The whole point of coming to Graz was to wean Annika from her tube but I hadn’t thought we would be looking at removing her Mic-key button for several months. Luckily Jai’s parents have lots of questions too. The rational to removing the Mic-key button (partly anyway) is so that they can stitch the stomach closed if it doesn’t close by itself within 2 days. The stomach wall is supposed to mostly close within a few hours of the button being removed. But I’ve also heard horrible stories where this hasn’t happened and the stomach acid then leaks out of the hole causing scarring. It’s then been months before anything is done about it. Apparently Graz has also heard of this happening and that is why they try to remove the button or G-tube before you leave the clinic. Anyway we have until next week to decide whether we remove Annika’s button.
3pm: LOGO (speech language therapy) with Elisabeth – she suggests we get different cups for Annika to try, instead of the bottles we have been using from juices etc. Hopefully she’ll learn to drink from a tippee cup or something similar. Amazing how far we have moved in such a short time from a few days ago.
While Gareth takes Annika to LOGO and Bella spends the afternoon playing with Nitya (Jai’s sister) I go and drop off the script for Annika’s heart medication, flecainide. We normally give this to Annika down the tube and therefore in New Zealand they prepare a solution for us that needs to be kept in the fridge and lasts only one month. We therefore had to get a new lot of flecainide while here in Austria. Luckily Annika has started swallowing her flecainide solution (all 1ml, twice daily) since we started the program. So the poor chemist had to break up the 100mg tablets into 20mg lots of powder which we can then mix into juice or custard to give Annika. There was lots of tsk, tsking and I’m sure some ^#$% in the back room of the Apotheke (pharmacy). The next day we ended up picking up 97 individual little folded up bits of paper with 20mgs of flecainide inside. It must have taken him forever to fold up all those pieces of paper. Cost Euro $30. I don’t think they would have done that in New Zealand somehow.
Annika had had a busy day and fell asleep in her stroller on the walk back to the Haus sonne. She has been very tired since starting the program, from lack of food as well as all the therapy too.
Annika and a chocolate drink in a bottle
Hot Dog stand at the hauptplatz. Yummy.
Annika with Bettina in occupational therapy.Video of Bella and Annika but I don't know how to turn the picture around. Will try to figure it out another time.
Saturday, October 24, 2009
Annika starting to drink
Day 5: Friday 16th October 2009 – Annika weighs 11.04kgs
Annika is to have 200mls nutrini while asleep tonight.
Today we found out that breakfast is included in the tariff for our hotel. We’ve missed a few breakfasts so far, but we slept in the first 3 mornings because of jetlag and would have missed those ones anyway. Wow! A buffet with eggs, bacon, cheese, fruit, chocolate cake usually (which Bella loved the first time but now sticks to cornflakes!), cereals, breads and tea and hot chocolate for our table.
11am: PT (physiotherapy) which actually involves cranial sacral therapy. Eva held Annika’s tummy and near the back of her neck for about half an hour. Eva was very happy with Annika and we only have to go for half an hour at the next session.
12noon: spielessen – Annika was trying to drink lots from her bottle but most ends up spilling down her top.
1:30pm ish: The doctors are quite happy though and seem to think that she is swallowing quite a bit of the liquid (soup at lunch time, but seems to love juices). They say she is medically fine. She’s happy, alert and still as cheeky as ever. It will just take time for Annika to learn to control her swallowing more. We are told there will be a play picnic on Saturday at 12noon.
Tram into the hauptplatz (town centre) and find out where an internet café is from the information centre. We have had a hard time finding a computer where we can easily access the internet. Find one very close by, 20mins cost 1 Euro. Yay, can now do my first blog of the trip, very quickly, while the kids go stir-crazy. The hotel is supposed to have internet access which turns out to be using the hotel computer when the main receptionist is not using it. Also tried at the hospital (you’d think students would have something at the university hospital) and one of the PhD students said we can use their computer when they’re not using it, which again hasn’t been ideal, and their computer is in the actual play picnic room where the spielessen is held!! Had time to use it for the first time yesterday.
3pm: While in town we get to see the Glockenspiel, with statues of a man and woman dancing. Bella is entranced. Photo below
4pm: Afternoon tea at the Hof backerei, yummy cakes, tea and hot chocolates.
Tea again at the Häuserl im Wald restaurant. It gets dark early here at about 5:30pm and cooking on 2 hot plates has been too hard to contemplate so far. There is not much cooking utensils either with a bread knife, a grater and the usual knives, forks and spoons is the extent of it.
Day 6: Saturday 17th October 2009 – Annika weighs 11kgs (1kg lost already)
Drop Annika’s feed to 150mls nutrini tonight.
Have had problems with mum’s laptop and we have busily saved all our pictures onto a USB stick instead. It seems to be a trip where all our equipment breaks down. Annika also threw her glasses on the ground on Thursday. Gareth ended up standing on them and scratching the lenses beyond repair, the frames were pretty knackered already but there was no fixing them this time. Prof. Marguerite was able to get us an appointment to get Annika’s eyes checked on Monday. Did she need glasses for the next few weeks? YES. Don’t you have her script with you? NO. It’s been nearly a year and she’s due to have her eye’s checked again. What if her prescription has changed for her glasses? Ok then we’ll get them to check her eyes here then. They speak English at the sehschule (eye clinic). The drama of Annika’s glasses continues on Monday.
12noon: spielessen – some of the other kids are eating small amounts of solid food now. Wow!!
Off to the hauptplatz again. This time we walk passed the kunstel (big slug looking building, housing a museum of course), onto the Murinsel (man-made island in the middle of the Mur river- see picture with Bella on it below), ride the Schlossberg Cave railway (“fairytale scenes through tunnels once used as a safe haven from the allied bombings during WWII”), up the glass lift to the Uhrturm (clock tower on the hill - see photo below with Gareth, Bella and Annika with her juice bottle in her hands). Then it started to rain so we run to the funicular (schlossbergbahn) and had a very steep ride down the hill again. The funicular reminded me so much of Wellington I kept looking for the harbour!! We then went for McD’s at the Jakominiplatz where Bella could get a Barbie doll with her happy meal!! Annika then fell asleep. It's been a very busy and tiring time for her.
Day 7: Sunday 18th October 2009 – No weight monitoring, no playpicnic! Free day.
No bacon at breakfast but a big bowl of strawberries instead. You can guess what Bella ate for breakfast then. Annika is continuously wet, messy and with a bottle in her hands. We make sure the plate is set up with food on it for Annika and Bella. We have a quiet walk in the woods which takes you right passed a restaurant. We end up going there for lunch. Seafood for Gareth, tafelspitz for me (like corned beef), pomme frites (chips) for Bella and soup for Annika. A family was having a celebration with a big cake and lots of pastries. They saw Bella looking and brought over 2 pastries for the girls to have. They looked very much like the pastry horns we have in New Zealand but instead of cream inside they had like a mock cream. Bella didn’t like them at all. But Annika wanted to try them. She licked the mock cream off my finger. She ended up swallowing about a tablespoon full. Very exciting.
We tube feed Annika 100mls of nutrini tonight. ANNIKA’S LAST TUBE FEED!!
More in 2 days.
Annika is to have 200mls nutrini while asleep tonight.
Today we found out that breakfast is included in the tariff for our hotel. We’ve missed a few breakfasts so far, but we slept in the first 3 mornings because of jetlag and would have missed those ones anyway. Wow! A buffet with eggs, bacon, cheese, fruit, chocolate cake usually (which Bella loved the first time but now sticks to cornflakes!), cereals, breads and tea and hot chocolate for our table.
11am: PT (physiotherapy) which actually involves cranial sacral therapy. Eva held Annika’s tummy and near the back of her neck for about half an hour. Eva was very happy with Annika and we only have to go for half an hour at the next session.
12noon: spielessen – Annika was trying to drink lots from her bottle but most ends up spilling down her top.
1:30pm ish: The doctors are quite happy though and seem to think that she is swallowing quite a bit of the liquid (soup at lunch time, but seems to love juices). They say she is medically fine. She’s happy, alert and still as cheeky as ever. It will just take time for Annika to learn to control her swallowing more. We are told there will be a play picnic on Saturday at 12noon.
Tram into the hauptplatz (town centre) and find out where an internet café is from the information centre. We have had a hard time finding a computer where we can easily access the internet. Find one very close by, 20mins cost 1 Euro. Yay, can now do my first blog of the trip, very quickly, while the kids go stir-crazy. The hotel is supposed to have internet access which turns out to be using the hotel computer when the main receptionist is not using it. Also tried at the hospital (you’d think students would have something at the university hospital) and one of the PhD students said we can use their computer when they’re not using it, which again hasn’t been ideal, and their computer is in the actual play picnic room where the spielessen is held!! Had time to use it for the first time yesterday.
3pm: While in town we get to see the Glockenspiel, with statues of a man and woman dancing. Bella is entranced. Photo below
4pm: Afternoon tea at the Hof backerei, yummy cakes, tea and hot chocolates.
Tea again at the Häuserl im Wald restaurant. It gets dark early here at about 5:30pm and cooking on 2 hot plates has been too hard to contemplate so far. There is not much cooking utensils either with a bread knife, a grater and the usual knives, forks and spoons is the extent of it.
Day 6: Saturday 17th October 2009 – Annika weighs 11kgs (1kg lost already)
Drop Annika’s feed to 150mls nutrini tonight.
Have had problems with mum’s laptop and we have busily saved all our pictures onto a USB stick instead. It seems to be a trip where all our equipment breaks down. Annika also threw her glasses on the ground on Thursday. Gareth ended up standing on them and scratching the lenses beyond repair, the frames were pretty knackered already but there was no fixing them this time. Prof. Marguerite was able to get us an appointment to get Annika’s eyes checked on Monday. Did she need glasses for the next few weeks? YES. Don’t you have her script with you? NO. It’s been nearly a year and she’s due to have her eye’s checked again. What if her prescription has changed for her glasses? Ok then we’ll get them to check her eyes here then. They speak English at the sehschule (eye clinic). The drama of Annika’s glasses continues on Monday.
12noon: spielessen – some of the other kids are eating small amounts of solid food now. Wow!!
Off to the hauptplatz again. This time we walk passed the kunstel (big slug looking building, housing a museum of course), onto the Murinsel (man-made island in the middle of the Mur river- see picture with Bella on it below), ride the Schlossberg Cave railway (“fairytale scenes through tunnels once used as a safe haven from the allied bombings during WWII”), up the glass lift to the Uhrturm (clock tower on the hill - see photo below with Gareth, Bella and Annika with her juice bottle in her hands). Then it started to rain so we run to the funicular (schlossbergbahn) and had a very steep ride down the hill again. The funicular reminded me so much of Wellington I kept looking for the harbour!! We then went for McD’s at the Jakominiplatz where Bella could get a Barbie doll with her happy meal!! Annika then fell asleep. It's been a very busy and tiring time for her.
Day 7: Sunday 18th October 2009 – No weight monitoring, no playpicnic! Free day.
No bacon at breakfast but a big bowl of strawberries instead. You can guess what Bella ate for breakfast then. Annika is continuously wet, messy and with a bottle in her hands. We make sure the plate is set up with food on it for Annika and Bella. We have a quiet walk in the woods which takes you right passed a restaurant. We end up going there for lunch. Seafood for Gareth, tafelspitz for me (like corned beef), pomme frites (chips) for Bella and soup for Annika. A family was having a celebration with a big cake and lots of pastries. They saw Bella looking and brought over 2 pastries for the girls to have. They looked very much like the pastry horns we have in New Zealand but instead of cream inside they had like a mock cream. Bella didn’t like them at all. But Annika wanted to try them. She licked the mock cream off my finger. She ended up swallowing about a tablespoon full. Very exciting.
We tube feed Annika 100mls of nutrini tonight. ANNIKA’S LAST TUBE FEED!!
More in 2 days.
Thursday, October 22, 2009
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).
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.
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.
Friday, October 16, 2009
Disneyland and now a week in Austria
Finally got to a computer and hopefully won't run out of time soon. Disneyland was very busy and tiring. Jetlag was bad for all of us. Girls were very unsettled but loved their time there. Annika somehow moved around so much her extension set kept opening and leaked nutini all through her bed nearly every night. Arrived in Austria on Friday 9th October again very tired but a much better flight as no-one was sick. This is the fifth day on the program and they have cut Annika's feeds to less than half. She starting drinking from a bottle yesterday!! Yay. Will try to get back soon to write more.
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