The Corkran capers

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.