Introduction to Graz - Graz Can Help You Teach Your Child How to Eat
Special feeding counselling for children with feeding tubes
NoTube was founded to help children around the world to overcome the severe condition of tube feeding. The ultimate goal is to teach the child how to eat for the first time in its life while simultaneously removing the feeding tube.
Based on more than 20 years of clinical experience the online medical coaching platform Netcoaching has been specifically developed for parents of tube dependent children.
I think it works out to be about 36 hours of travel time from when we left the guest house to when we arrived at our front door.
It is strange to think we were in the snow just the other day and today we are melting with the rest of Melbourne (actually it hasn't been too hot today).
Before we left on Saturday, a new family arrived at the guest house with their tube fed daughter. They are from South Africa. We offloaded all the extra things we weren't taking back to Australia (mostly food). We took them for the walk to the hospital as we had our last meeting at 12. They were as grateful as I remember being when we first arrived and met the NZ family who showed us around! Nissim and their daughter are about the same size and age and played together so well it was a shame they hadn't been in our group.
The flights home were easy enough, we wouldn't want to do it again anytime soon, but it wasn't too bad.
We started with an hour or so delay from Graz to Frankfurt (snow). After getting bored in the business lounge we discovered a kids area with a slide and climby thing in the boarding gate area. The snow looked beautiful falling in the bright lights of the airport runway. Once we boarded the plane they had to wash the snow and ice off before departure, which took ages. Finally in the sky and flying up through the snow, wow, I have never seen anything like it. Because we were going so fast the snow looked like streaky white lines. It actually looked terrifying. Nissim slept in my arms for the hour long flight.
We didn't have long to wait in Frankfurt, so no business lounge time. We found our way from Lufthansa to Qantas with not too much trouble. There were a few very helpful people scattered around the massive maze of corridors, thank god. We had priority boarding as we have bubbies and got on first. One lovely thing about Graz and Frankfurt was that they let us keep the double pram right up until we walked through the boarding gate! This made a HUGE difference as we didn't have to carry kids and carry on bags.
Flying with the babies isn't hard, it is the 'in transit' bits that are difficult and exhausting. The babies don't cope well in between flights, Nissim hates that he is woken up and then not allowed to run around everywhere and Tova just hates it because.
We fed Tova in most boarding lounges, with the syringe, at least these days there is no tube going into her stomach! It just feels a bit funny in public.
Lovely business seats! Nissim remembered all the fun things from our last flights 5 weeks ago. He played with the light, on, off, on, off, on, off, on, off. We were happy because he was happy. We had two seats at the window and one seat on the isle, the window side also had the bassinet, a blessing! Next to the isle seat were two passengers who had been upgraded from economy seats for free. They were a lovely couple who have been married for over 40 years. They gave us some magic stop jet lag pills (herbal), that have so far seemed to have helped. The kids were great and slept lots and played on the massive seats and 3 rows worth of room we had. How will we every fly economy again?
In Singapore we didn't have time to go to the business lounge as there wasn't long until our connecting flight. The kids were very unhappy to be woken and restricted yet again. Poor little things. Yuval and I were pretty tired and both trying to keep it all together while waiting for the gate to open. Again, priority and first to board. Upstairs this time. Newer plane, slightly different and nicer seats. After stressing out a very nice flight attendant by rearranging about 6 passengers we managed to have the two seats at the window with the bassinet and an isle seat next to another family of 4 (one in the middle and two by the other window). Also after a very long time on the tarmac with very unhappy restricted babies we were finally in the air and able to let the kids be free. They both slept, watched tv and played nicely..
We had a straight flight from Singapore to Melbourne, making it easier than swapping planes at Sydney.
We landed in Melbourne, no more security checks, no more changing planes, only one more taxi ride with the destination of our house! It felt really strange.
Tova recognised the area around Chadstone and was mesmerised looking out the window the rest of the way home.
36 or more hours later we arrived at our front door. The grapes are growing but still not ripe, all the plums are gone from the front trees (we missed eating them this year), there are ripe figs on the front tree, the vegie patch has an amazing array of ready to eat food and mum had left heaps of cooked food for us in the fridge. She had also left Tova some baby fruit puree and pudding! She is the best mum in the world!
Our new laundry is ready to have the washing machine put in it (should happen today) and I had the first shower in the new bathroom.
The kids were happy to see all their toys and bedrooms.
The grandparents said we don't look too fat, they were expecting allot worse, especially with Nissim. They did notice how skinny Tova has become.
I felt the emotion and pride in my mums voice when she watched Tova eat for the first time yesterday. Mum says that Nissim looks more grown up, like a little boy now, she is also impressed about his walking skills. Grandpa Russel got a hug (I don't even get hugs).
So, after much sleep and not too much trouble I have awoken at 7am on Tuesday the 2nd of Feb 2010 in my bed in Melbourne, feeling fine, a bit heavy, but fine. The kids almost slept through the night from about 10pm (one feeding frenzy for us all at about 3am) and are still asleep now at 8am (so is my lovely exhausted husband). I have a feeling that my (and Tova's) jet lag wont be so bad this time.
We haven't tube fed Tova for more than a week, and in the last 3 weeks we have only fed her a little bit via tube when she was sick. We will take the tube out today or tomorrow I think. WOW! I will have to blog that.
We are ordinary people, walking around the town, eating, drinking, looking at sights! Well, mostly ordinary, we still have to feed Tova from a syringe, but at least it goes into her mouth not a tube connected to her belly!
Tova is weaned. That actually means that Tova eats to survive, with her mouth, food! Not milk and not via PEG. I am still trying to get my head around it.
It was a bit sad today, saying goodbye to the people that have helped change our lives forever. Especially Eva, what a remarkable person. We owe so much of Tova's success to her. Thank you Eva. The entire team are incredible. Special people doing something that is so dramatically life changing for others. Thank god for people like them.
Nissim went out with a bang at play picnic today. All I have to say about it is, look at the photos.
Tomorrow we are going to see Prof. Marguerite at midday. There is apparently a play picnic, not sure that I want the kids to participate as I have packed their clothes. Oh how I hate packing! At least it is 'going home packing', which is much easier than the 'going away packing'.
After the hospital today we went on the 7 to the end of the line, to find a mythical shopping center. On the way back we stopped off in town and had a walk around. Again, I bought something in addition to buying food. woohoo.. I now have 3 things from Graz (and a new body shape).
Well, what a journey. All the way across the world. It is nice to think that in a few days we will all be in our own space in our own beds and OMG, I will have someone other than Yuval to talk to. You know I love you lullie, but OMG, hehe... We have been joking about spending some quality time together when we get back.. It is all in good fun.
I am not sure what I will do with this website now. Um, watch this space? I guess I will have some going home photos and stories to add. People in Graz might want to be updated from time to time about how Tova is going. So I might keep it going. Unsure.
I will write once we are home.
Thank you EVERYONE for your support. We honestly couldn't have done it with out you.
Tova doesn't use the PEG for anything and we feel very confident about it all. Drinking is getting easier and she eats like a true Sibony (almost).
All Yuval and I are thinking and talking about is HOME. The news said to expect delays because of the snow, as long as we are in a big airport with the lounge, we will be happy. Especially Yuval, if there is free food there is a delighted Yuvie!
Yuval is feeding T next to me in bed! She looks incredible moving her little lips and I can hear her swallowing. Beautiful (90mills of carrot puree eaten!). This has been and still is one of the most remarkable journeys of my life. I am completely blown away about this program. There must be a way we can help establish this in Australia. I wish I had studied medicine at uni, I would run the clinic myself!
This morning Nissim and Yuvie went to breakfast at the main house. Tova slept in, so I stayed with her. They boys had fun and apparently fell over in the snow (no one hurt).
We had OT and Play picnic today. Both were good. Oh, I forgot to weigh Nizo. Perhaps tomorrow if I remember.
Nissim has a massive black eye. We think it is from falling off the bed the other day. It looks so horrible, poor baby! It isn't bothering him, nor are the four new teeth trying to all grow at once.
Tova had OT first this morning, everyone had fun. The OT has a big 'bath' of lentils (raw) that Tova sat in and Nissim put his hand in. Lots of fun!
Physio was good as usual, Nissim played and talked and walked around while Tova had cranio. Eva agrees that by looking at Nissim for more than a few moments you lose a year off your life (he crashes lots).
In play picnic Tova started by eating her daily Nutella packet from my finger, YUM. The doctors came in and asked about having Tova's PEG removed, but after talking to Yuval and the Irish family, I think we will leave it in till we get home. There really isn't any reason to leave it in nor any reason to take it out. May as well leave it in and not worry about it for the journey home, It is VERY easy to take out, we will do it ourselves once we are over jet lag, perhaps... Who knows how we will feel in the next few days.
Tova is eating good amounts now. She is hovering around the 8kg mark - SKINNY. Hopefully when we get home we can fatten her up by adding cream and oil to her food. I am now also adding water to everything she eats and not putting any in the tube. We spoke to the dietitian today, she had a few tips which is helpful.
There were more comments today about weighing Nissim. hmm.. Poor fat little dude. If I remember I will weigh him tomorrow. I think he was just under 9kg when we left Melbs. I have to check his records when we get home.
We jumped on the number 7 tram to the town again today. Just for something to do as both babies had fallen asleep in the pram. I actually brought something today, a dangley thing to hang on the window, and food! The sun was shining today which was nice. A beautiful blue sky! It is still freezing. I think this morning was the coldest morning of our stay so far. The river next to the hospital that usually, remarkably remains running, was today almost completely frozen over. According to CNN (our only English TV channel) there is more snow and cold to come.
Lucy (Irish) has started to eat! It is completely wonderful to see her eat, she still puts up a bit of a fight, but I think it is just from habit. She always looks so proud once she has actually eaten her yoghurt! Well done Lucy! They are going home at the end of the week too.
Home is so soon! We are very excited to be going home!
