In Budapest: Raday Utca

20130726-203100.jpg

I am not sure how the photo above will come out. It is supposed to be a panoramic view from the balcony of our latest residence. We have moved down from the leafy suburbs of the Buda hills to the throbbing heart of Pest. Quite literally throbbing right now with some tinny Euro-rave blaring out from the bar over the street. My father-in-law came to check the area out to see if they wanted to spend their last couple of days in Hungary with us and promptly checked themselves into a spa hotel on the Slovakian border. He can’t go far as he has a ticket to the Hungarian Grand Prix this weekend.
But this is what we were after, a slice of city life for the Baxter bumpkins. Admittedly this meant putting up with what looked like a stag party cheering leerily late into the night wearing toy fireman’s helmets. Thankfully they were not Brits, they might have been Hungarian but with my very limited Hungarian any pissed Eastern European sounds much the same to me. Otto is mastering Hungarian and has just impressed a waitress with the words he already knows after just a week. I think it will do him a power of good to have a go at learning it while we are here and then, when he starts French next term it will feel like a cake walk.
We have also completed the first week at the Peto with AJ. She really is coming along, leaps and bounds might be a bit of an overstatement and it obviously would be quite a surprise to see her leaping and bounding but she is making steady progress.
The system they use is very interesting. They make her do everything. Use her right hand, stand up, walk and just give the support she needs to do any given thing. Everything is accompanied by a song, e.g. “Standing, standing, standing tall, standing like a wall”. The rhythm of the music helps reinforce the action in the brain apparently and it definitely makes it feel more fun than if it was a question of grimly manipulating their twisted limbs into a series of positions. All the conductors ( the teachers in conductive education) seem to have beautiful singing voices but fairly thick Hungarian accents. As I can’t sing to save my life, when I sing along with them I end up singing in a Hungarian accent too.
We are in an international group with a Portuguese, a Romanian and a Swede. There is a real feeling of camaraderie amongst the parents and the children too. In fact, while we have been doing one hour individual and one hour in a group this week, next week we will be doing three hours in the group. They think that the kids bounce off each other and motivate themselves. AJ is a bit slow on picking up some of the actions of the songs but enjoys having others around her. She had the group in fits of laughter after the conductor gave a long complicated set of instructions and AJ just looked at her and said “Blah, blah, blah.”
Her sitting has improved a lot, she held herself up for quite a while today. Her right hand has relaxed and she has started doing small things with it. Fo had her banging the towel rail, which she would never have done before.
Three more weeks of this will definitely do some good but I don’t think it ends here. I met a British family with a teenage boy who have been coming here for sixteen years since he was two. So maybe Otto should forget the French and focus on the Hungarian!
Well I have got a Ken Follett to read and some Tokay to drink. More anon.

Advertisements

In Budapest: Accepted at Petö

I have been told by various sources that I should update to say that we have been accepted at the Petö (that shouldn’t be an umlaut this time but a double accent which my iPad does not have as an option).
We have now done two full sessions which are quite hardcore.
I will update properly soon with news on how the treatment is developing.

20130723-164044.jpg

Buckinghamshire to Budapest: Made it!

20130718-212454.jpg

Well that was remarkably stress free. 1,500 miles or so and only one yelling session from AJ and a slightly grumpy Austrian Gasthof owner and here we are in Budapest. Or more strictly speaking Buda, the city is made up of two parts, Buda in the hills and Pest the other side of the Danube on the plain.
We are in a lovely Villa with an indoor pool and the view you can see above. We’ll be here for a week with the in-laws and some friends are joining us for a few days so we can acclimatise and be a bit British for a few days but I am very much looking forward to launching myself into the Hungarian way of life. If the food we have had so far is anything to go by, it is looking good. We stopped at a motorway service station and I had some amazing chicken pancakes. And I have made a start on working my way through all the varieties of sausage on offer. Fortunately I like paprika very much, this certainly would not be the place to come to if you didn’t. The chicken pancakes came in a paprika sauce and the sausages were paprika laced. I am definitely going to have to work out the words for sweet paprika and spicy paprika as one of the sausages was pretty kicking.
But tomorrow the real work begins. We are taking AJ for her initial assessment at the Peto Institute at nine o’clock sharp. Obviously it would be a major bummer if they took one look at her and decided that after there was nothing they could do for her and we would have the schlep the 1,500 miles back again! But she has worked with Peto trained people before and this is pretty unlikely. So I suppose the question is: what can we expect?
All along I have been trying to manage my own expectations. This blog has often been about me trying to sort my thoughts and emotions out by getting them down in writing, which in turn has helped me deal with all of AJ’s problems. So I will try to list what her problems are right now, as I see them, and then I can return to this over time and see what, if any, progress she has made.
– She has no balance. This means that she cannot sit up but it goes further than that. If she is sitting on your knee for a few seconds, she tends to throw herself backwards. She also almost wilfully slumps in a chair. Even if you prop her up with cushions so she looks perfectly comfortable, five minutes later she’ll be sitting like the pissed bloke in the lounge bar at last orders. This has a detrimental effect on all of us who care for her, Fo particularly, as it means she needs to be held constantly. It also seems sad for her as she cannot sit and play with toys or a flick through a book. And she can’t watch TV, which as any but the most hothousing of parents will admit is the go-to solution for a moment’s respite.
– She doesn’t use her right hand. Luckily she has always been left-handed! But since the brain thing (yup it still hasn’t got a name! We will probably finally get it diagnosed… But in Hungarian!) This is odd. It is fully functional and she moves it quite a lot. She will involuntarily bring it up into a Nazi salute (ironic, I know!), which you have to look out for as it will often send her or your drink flying. She plays with it with her left hand but will not use it. We try to wrap it round things like the handle of a seesaw or put a biscuit in it, Otto has recently become convinced that he can “low five” with it but really she will not do anything with it voluntarily. If she is lying on her tummy she won’t even lean on it for support, which means that she is a bit stumped by trying to play and support herself with her left hand.
– Her legs. These are definitely more functional than her right hand but they are very stiff and she doesn’t seem to be able to bend them at will. This, coupled with her lack of balance, makes her walking a very distant wish.
– Her vision. We do not really know what is up here. On paper her vision has improved since the chemotherapy. She used to wear glasses and now, apparently, according to the tests, she doesn’t need to. But, but, but, she does not process sight properly. You can be standing quietly near her and she does not know you are there. She does not focus on the TV unless you are holding her very close to it. Actually, as an aside, she has had her best telly viewing experience ever on this trip. My sister Mary gave her the series of Something Special for her iPad and Fo got her a holder for the headrest and as she has been in her car seat and the screen in front of her nose, she has been entranced.
So what can we expect? I would love her to just be able to sit up unassisted and to use her right hand even just passively as a support. Can the Peto Institute do this? …we shall see. They have said that they have no experience with Down’s Syndrome. Their technique is called Conductive Education and people with DS aren’t really that good at any kind of education, they learn slowly. You can’t say “Come here and do that!” It needs to be “Come here. Do that.” Conductive Education was developed for people with Cerebral Palsy which I know nothing very much about but seems to be very physical and Otto’s friend Archie and the woman who appears on The News Quiz are bright sparks. Hopefully they can adapt the technique a bit to compensate and let AJ learn at her own pace.
So while all of this might sound a little negative there is one major positive; this is Ava-Jane we are talking about.
As anyone who knows her will attest, she is a very is a very determined little person. As she can’t user her right hand at all and her legs not very well, she can’t crawl, so she rolls and she wriggles and she gets herself places. No sooner had we arrived here and she saw an expanse of grass that we were prepared to let her loose on, i.e. not a litter-strewn service station picnic area or a sheer alpine slope, she was off. The people at PACE say that her vitality will stand her in good stead as will the fact that she has once sat up, used her right hand and crawled, so she knows these things are possible. So, underneath all my reticence to risk too much hope in the whole venture beyond having a wonderful new experience, she might well surprise us all and “Budapest to Buckinghamshire” might be by foot!!! OK, that could be the fine 2010 Hungarian wine I have got my hands on speaking.
I think I might have done this before in this blog… I am the most unbelieving of unbelievers but could you all pray to the gods of your choice, cross your fingers and give it a good “Come on Ava-Jane” and let’s hope that it will do for AJ what believing in fairies did for Tinkerbell.

p.s. I’d forgotten how this blog sometimes has a life of its own, I was only going to say “made it!” and post the pic of our snazzy view!

Budapest to Buckinghamshire: AJ pic and a correction

I realised that I had spelt plain “plane” and could not really live with myself. I could hear the tutting coming from my dear colleagues and ex-colleagues from Richmond and OUP. Immo you are right, we are in a Gasthof and no umlaut in sight. Also I was pretty sure that I was getting dirndel wrong. Oh well from tomorrow we will be steeped in Hungarian, which is sure to throw up all sorts of confusions.
New fact for me, Hungary is not derived from Huns even though Attila hung out there. You live and learn!
Today was the first day of tears (it was always going to happen Belen). AJ had a bit of constipation and was feeling very uncomfortable. It was a bit of a long haul today and we petered out somewhere between Linz and Vienna, so I have not yet had the chance to play the Ultravox song which I plan to blare to the family as we pass the Austrian capital.
Thanks all for your comments, I love the Liechtenstein facts Mr Savage, I could barely spell it!
The AJ pic that I missed:

20130717-215359.jpg

Buckinghamshire to Budapest: Eight long years!

Our trip has taken us to the Madrissa Hotel to coincide with our eighth anniversary. And what an action-packed eight years it has been. I won’t bore you with the details but I feel I can safely say that we have packed it in.
The Madrissa Hotel is a very special place for Fo and her family. Her grandfather started coming here in the 1930s and the family who own it are very old friends. They gave us a week here for our wedding present to go skiing. It is a proper old-style Austrian hotel, all the waitresses is dündls (not sure if that gets an umlaut but I would like to include one), seven course dinners and lots of wooden furniture.
I went for an alpine walk with my father-in-law, John, today. John is thirty years or so older than me but they have been far cleaner living years than my mere 44, so he is considerably nimbler on the alpine walking than me. Fortunately I bought myself some walking shoes at the foot of the mountain so I was not about to set off in my sandals. To be fair I coped, I even managed to pick Fo a nosegay (again a bit like the gratuitous umlaut above, that is just a word I wanted to use) of alpine flowers for our anniversary. This undoubtedly romantic gesture was somewhat tempered by the fact that, having looked the flowers up in John’s copy of “Alpen Blummen”, I found out that a number of them were highly protected and at least one was poisonous. But we made it down, oh, yes, I have failed to mention that my dipping my toe into Xtreme sports was all downhill. But, hey, it was steep and quite gravelly. It is at this point that I should say that I discovered muscles that I did not even know I had. The trouble is that would imply that I was fully acquainted with my full muscle set and these were but new ones to add to a ripped repertoire, which would, I am afraid, be a lie.
We press on tomorrow, down from the Alps and onto the Austro-Hungarian plane. We might make it as far as Budapest but, in all likelihood will find a nice Gästhof (that definitely gets an umlaut) along the way to rest our heads.
Was just writing this on the balcony. Fo has locked me out… Should I read anything into this?

And here are some pics, the view of the local church from our window, AJ on top of the mountain, John and his dogs, the real Milka Cows, contrary to popular misconception (i.e. it is what I thought, Milka is from Austria not Switzerland) and an arty one of some of haflinger ponies from the area.

20130717-090330.jpg

20130717-090350.jpg

20130717-090425.jpg

20130717-090610.jpg

This slideshow requires JavaScript.

This will be a very quick post with lots of pics. We have done Belgium to Austria via Luxembourg, Germany, Liechtenstein and Switzerland.

We stayed one night with Todd and Gerlind. Todd old an old mate from Uni and has followed Gerlind to her home town of Engen. Todd has always been an amazing collector, forever rummaging car boot sales and charity shops rarities. Their home in Engen truly is his masterpiece. It is an ancient house with six floors, which Todd has been doing up six eight years a jamming full of outstanding bit and pieces. 

Buckinghamshire to Budapest: Brussels, the City of My Chilhood

20130715-003017.jpg
Otto’s first new country to add to his scant list of two (France and Spain) was Belgium. I lived in Brussels between the ages of four and twelve so was looking forward to taking my family on a trip down memory lane. Obviously there is nothing more enjoying than listening to an old fart rambling on about his childhood, this was my first school, the hill where we used to go tobogganing and so on. Otto was keener to be taken to the best frites shop in Brussels.
We stayed with the Marchand family, old friends of ours from back then who treated us royally. I hadn’t seen Bruno for 35 years, he had looked after me when I was a kid and he was a teenager. I still felt incredibly young next to him even though we were two middle-aged men having a fag and a beer. I always think that those sort of age hierarchies that are set during childhood are hard to shake. I still don’t feel as grown up as the big kids at school when I first got there.
Belgium is a funny place. I obviously was not very politically aware at the age of twelve but I feel that it has become even more split between the Flemish and the Walloons than it was then. In my usual big-headed way, I had thought that Hungary was the first country going East where I would struggle linguistically. I imagined my French and a smattering of German, would get us through France, Belgium, Luxembourg, Germany, Switzerland, Austria, I am not sure what they speak in Liechtenstein but it would see a but harsh if they had their own language. But as it turned out I was stumped at our first stop. We stopped off in a small village in an attempt to get ourselves a bag of chips, just one of the challenges my mother has set Otto. The lady in the shop only spoke Flemish, no English and certainly no French. Where the signs had once been in Flemish and French, they are now just in Flemish or French. I think it is a shame, in an age when we should all be pulling together, that such a small country is pulling itself apart. And for what it is worth, I hope Britain doesn’t either.

Here are our lovely Belgian friends, the Marchands and Madame Marchand’s roses (she will kill me if I don’t include them).

20130715-003533.jpg

20130715-003544.jpg