On 28th of Dec 2011, after over 30hours of travelling we finally arrive in Austria, Graz. It feels like a relief to be here, after working so long on our Mission for Max fundraiser. Max was...um..whats the right word.. "Difficult" on the flight. Over 30 hours of flying and waiting at airports and an active 2 year old boy was... difficult!
We had a few days to settle in, get over the jet lag and adjust to the time difference before we started at the hospital. We are staying at Hotel Gollner in a great little self contained apartment right in the city centre of Graz. We also had these few days to explore this gorgeous city, lots of beautiful old architecture, cobble stone streets, cosy little cafes and fairy lights everywhere. Its very cold here, it only gets to about 2 degrees Celsius at the most, but we have become used to this already and just rug up to stroll the beautiful, quaint, little streets. It was easy to believe we were here for a holiday for a few days, we enjoyed New Years Eve here with a magic show in the city centre square and little huts everywhere serving warm beer and hot spirits, and lights everywhere like a fairytale wonderland! Although in the back of our minds was always that thought of why we're really here, and it was all to start on Monday 2nd Jan.
Monday 2nd Jan 2012: Day 1
We got a taxi from the hotel to the hospital. No many speak much English here so we had it written down in German to show the driver where to go. Its only about a 7 min drive away and apparently a tram that goes there directly from the hotel. We were so glad we got a taxi, because the hospital is HUGE! We would never have found where we were meant to go if we'd got the tram. The hospital is so big its like a small city of its own! The driver took us to the door of the kids ward.
We started the day with a meeting with all the medical team and the 2 other families there for the same reason as us, to wean their child off tube feeding. All 3 kids are boys, our Max 2yrs old, John from Ireland 18months old and Gregor from Germany is 5 yrs old. Then we had a private one on one meeting and assessment with Max's own doctor. We got given our individual program and got started straight away with the 'play picnic'. Every day at 12pm all 3 families and all the medical team met in a room and eat. There is all different foods in little bowels all over the floor/picnic rug. We all just sit around and eat and the kids are encouraged to do what ever they like with the food. They can crawl around and play with it, taste it, share it, throw it, whatever they like and us adults just eat what we bring along and chat. The idea is a non pressure, fun, friendly environment, to build the child's trust with food and too see it as something fun, social and something they may even enjoy one day. Max spent the entire hour crying and cuddling me or Steve, he didn't touch any food. None of the kids really did. One little boy, John tipped a bowel over but that's about it. They doctors said its OK, its day one, at this stage they are just getting familiar to a new situation. After this Max had speech therapy. The speech therapist mainly just wanted to meet us and get to know Max and told us she will be doing activities with max over the next few weeks to desensitise his oral aversion, such as games to build trust to let her and us touch his mouth etc. Before we went home for the day we were told to reduce his tube feeds that day. Max usually is tube fed 1300ml per day over 24 hours. We were instructed to stop his night feed at 5am and he is to have nothing via tube until after the play picnic at 2pm. So he went from 1300ml to 900ml on day 1.
Tuesday 3rd Jan: Day 2
We started the day at 10am with PT/physiotherapy. Here we mainly discussed his behaviour and how we need to make him more independent so he will eventually independently help himself to food and drink, its amazing how much we are learning and how everything is related. Next was Speech therapy or Logo as they call it here. Today she got Max to play with a doll house with dolls that were in a kitchen. He called the dolls Buce (his uncle )Bruce, Dole (his aunty Nicole) and Edi (his cousin Ethan). He was encouraged to play feed them and sit them at a kitchen table. Again at 12 the play picnic, and again he cried and clung to Steve and I, and again he did not interact with or touch the food. They decided to send us home as they could see Max was too tired and upset to continue.
We went home and he slept for a few hours then we spent some time with my folks that have just arrived in Graz. Steve and I explained to them all about the rules and strategies they want us to follow and Mum offered to have Max stay in their room so Steve and I could catch up on some sleep, as Max has been waking at 3am every day here! Mum put some food on a little table and Max sucked on a bit of chocolate and tried to eat a blueberry! He gagged on the blueberry but that's OK, he tried and is showing some interest! We all have to ignore these little achievments and make no fuss or 'big deal' about it in front of him. The more he knows how much we want him to eat the more preasure he feels. We were all quitely smiling!
We had a few days to settle in, get over the jet lag and adjust to the time difference before we started at the hospital. We are staying at Hotel Gollner in a great little self contained apartment right in the city centre of Graz. We also had these few days to explore this gorgeous city, lots of beautiful old architecture, cobble stone streets, cosy little cafes and fairy lights everywhere. Its very cold here, it only gets to about 2 degrees Celsius at the most, but we have become used to this already and just rug up to stroll the beautiful, quaint, little streets. It was easy to believe we were here for a holiday for a few days, we enjoyed New Years Eve here with a magic show in the city centre square and little huts everywhere serving warm beer and hot spirits, and lights everywhere like a fairytale wonderland! Although in the back of our minds was always that thought of why we're really here, and it was all to start on Monday 2nd Jan.
Monday 2nd Jan 2012: Day 1
We got a taxi from the hotel to the hospital. No many speak much English here so we had it written down in German to show the driver where to go. Its only about a 7 min drive away and apparently a tram that goes there directly from the hotel. We were so glad we got a taxi, because the hospital is HUGE! We would never have found where we were meant to go if we'd got the tram. The hospital is so big its like a small city of its own! The driver took us to the door of the kids ward.
We started the day with a meeting with all the medical team and the 2 other families there for the same reason as us, to wean their child off tube feeding. All 3 kids are boys, our Max 2yrs old, John from Ireland 18months old and Gregor from Germany is 5 yrs old. Then we had a private one on one meeting and assessment with Max's own doctor. We got given our individual program and got started straight away with the 'play picnic'. Every day at 12pm all 3 families and all the medical team met in a room and eat. There is all different foods in little bowels all over the floor/picnic rug. We all just sit around and eat and the kids are encouraged to do what ever they like with the food. They can crawl around and play with it, taste it, share it, throw it, whatever they like and us adults just eat what we bring along and chat. The idea is a non pressure, fun, friendly environment, to build the child's trust with food and too see it as something fun, social and something they may even enjoy one day. Max spent the entire hour crying and cuddling me or Steve, he didn't touch any food. None of the kids really did. One little boy, John tipped a bowel over but that's about it. They doctors said its OK, its day one, at this stage they are just getting familiar to a new situation. After this Max had speech therapy. The speech therapist mainly just wanted to meet us and get to know Max and told us she will be doing activities with max over the next few weeks to desensitise his oral aversion, such as games to build trust to let her and us touch his mouth etc. Before we went home for the day we were told to reduce his tube feeds that day. Max usually is tube fed 1300ml per day over 24 hours. We were instructed to stop his night feed at 5am and he is to have nothing via tube until after the play picnic at 2pm. So he went from 1300ml to 900ml on day 1.
Tuesday 3rd Jan: Day 2
We started the day at 10am with PT/physiotherapy. Here we mainly discussed his behaviour and how we need to make him more independent so he will eventually independently help himself to food and drink, its amazing how much we are learning and how everything is related. Next was Speech therapy or Logo as they call it here. Today she got Max to play with a doll house with dolls that were in a kitchen. He called the dolls Buce (his uncle )Bruce, Dole (his aunty Nicole) and Edi (his cousin Ethan). He was encouraged to play feed them and sit them at a kitchen table. Again at 12 the play picnic, and again he cried and clung to Steve and I, and again he did not interact with or touch the food. They decided to send us home as they could see Max was too tired and upset to continue.
We went home and he slept for a few hours then we spent some time with my folks that have just arrived in Graz. Steve and I explained to them all about the rules and strategies they want us to follow and Mum offered to have Max stay in their room so Steve and I could catch up on some sleep, as Max has been waking at 3am every day here! Mum put some food on a little table and Max sucked on a bit of chocolate and tried to eat a blueberry! He gagged on the blueberry but that's OK, he tried and is showing some interest! We all have to ignore these little achievments and make no fuss or 'big deal' about it in front of him. The more he knows how much we want him to eat the more preasure he feels. We were all quitely smiling!
Thanks Kirstie. Being able to read what you're all going thru is amazing. It must be reassuring to have the other 2 families doing the same things. Glad Anne and Bill are there for some extra support. Marilyn
ReplyDeleteFantastic!!! Which therapists were assigned to Max
ReplyDeleteHe sucked on some chocolate! THat's awesome. BTW it took months after tube weaning for Rebecca to be able to tolerate any lumps or crumbs--her gag reflex was just too sensitive. We still mainly feed her purees.
ReplyDeleteJane T.