The Tovington Post

Jan 6th  2010

We woke up to a silent and motionless snowy white public holiday in Graz. Waking up and looking out the window felt like someone had been up all night wrapping the world in magic white velvet, waiting for someone to go outside and unwrap the amazing present that lay beneath. I went out first, well actually I was second, I found the fluffy kitty cat sitting on the stairs waiting for someone to let him in. The snow was pure and other than kitties paw prints, untouched. Stunning.
Yuval enjoyed touching the fluffy cold snow for the first time and the kiddies were pretty much indifferent.

We offered Tova food and water (via mouth) for breakfast. I think she had some sips and ate a little. It is really hard to tell as lots gets spat out. But she is letting us put food IN HER MOUTH! That is incredible.

The NZ family and the Sibony family wandered off through the snow white forest to the main hotel (it is about a 5 minute walk up the back of the property and literally through the forest) for breakfast. Nissim was his usual self and ate everything, this was his third breakfast for the day (and it was only 9am). It was a lot of fun and really nice to have a talk with the NZ family. Oh and on the way Yuval fell over in the snow holding Nizo. No one was hurt and it was kinda funny.

Play picnic was at 12. Both babies slept most of the walk to the hospital which was cute (see pic).
It is simply incredible to see the dramatic changes in many of the children. It has only been 3 days and other than cutting down feeding via the tube, NOTHING has been done, yet so much has happened. I can't understand how this extremely simple and amazingly effective process can't be done in Australia. There is nothing fancy about the hospital, the picnic is just done on the floor of an an empty room on bed sheets. Anyway..

Yuval and Tova sat down at the picnic and did their thing. The head doctor, Margureite was completely impressed by Yuval's brilliant way with children and told him he shouldn't be working with machines, his calling in life is to work with children! He is a fantastic dad, my kids are VERY lucky.

Tova has been astounding with food. She ate today for sure. Slowly, slowly it is happening. She isn't eating like Nissim yet, but she is on her way!

Today she hasn't had any PEG feeds. Her next PEG feed is at 8pm tonight while she is asleep. We now have to hide anything and everything tube related around the hotel, she isn't to know about any of it anymore! OMFG I have this overwhelming feeling that Tova is actually really going to eat, like for real. Also, she had real sips of water today too. This is madness! How can this be so simple? There has been not one tiny second of suffering... Hopefully it will stay this way! And to think that some really f*$#ing stupid therapists in Australia (not ones we see now) have said that Tova will never eat. IDIOTS! Scary to think these people are telling other parents that their kids will never eat and those families actually believe that to be true. I am glad we didn't fall for that nonsense!

Oops ranting...

The little princess I have previously mentioned, who hates food touching her was holding a piece of cake today. She wasn't actually eating it, but holding it is good. Apparently when she checked in she introduced herself to the doctors as "the princess that will not eat". She isn't tube fed, but she has never in her life eaten any solid food, she has only ever had small bottles of milk and uses dummies as a substitute. Today the doctors took all her dummies away, she got so mad she bit her self and is now covered in band-aids. Even though she is somewhat nuts she is absolutely adorable.

Nissim was too full from all his breakfasts to eat much today. Just one chocolate. He had fun watching other children play with food.

Well, we spent some time aimlessly wandering around in the snow then back to the Hotel as everything is closed in Graz on a public holiday and cafes aren't much fun as everyone smokes in them.

Margurite said there is a service at shull on Sat morning. Perhaps we will go to that.

I hope it snows again tonight.

Tova is amazing!

Jan 5th 2010

Nissim had chips, chocolate and cake for lunch today! All I could do was watch and shake my head. The doctors say that 3 weeks of this won't hurt him one bit. I recon we are all going to go home quite a few kilos heavier!

Day 2 of weaning. Tova skipped breakfast and lunch tube feeds today. She didn't seem to mind too much. She signed for food and drink a few times and was promptly presented with cups of water and spoons of puree fruit! She licked and tasted everything.

10am we had OT, Tova loved it, she played with some beads in a tin and a toy she could drop wooden balls into and watch them roll down little ramps to the bottom.

11am she had Physio. The physio did some craniosacral therapy with Toki and we talked about needing more kinesiology to help bring Tova's spirit into her body. She also mentioned some therapy for families of Holocaust victims, I am going to have to look into that. Something about there being unfinished business and unhealed scars. We will try anything, as long as it doesn't hurt!
The physio also had some ideas that go against everything we have been told by our Australian therapists, we will try the new methods for the time we are here and see how it goes. She wasn't saying the Aussi way doesn't have its place, just that we should try this other way for a bit. It can't hurt.

12 was the play picnic. Again the Sibony babies made the most mess. Nissim was showing everyone how to eat (he can stuff an entire piece of cake in his mouth in one go). I don't think he will be very impressed when the other kiddies start to eat 'his' food!
I noticed changes in the other kiddies already today. The princess from yesterday who couldn't deal with having a spot of food on her hand, today asked for a chocolate to eat! She has never eaten anything in her life (she must be about 4). Another child that wasn't interested yesterday, today was playing with some chips and laughing at the packet. It is just crazy to see such a massive change in ONE DAY!

Tova! This baby is amazing! Yuval spent a lot of time playing with Tova and food at the picnic. She was opening her mouth, letting the food go in, holding the spoon, taking the spoon to the bowl and her mouth, trying to feed Yuval and very much enjoying herself! I am not sure if she actually ate anything, but that isn't the goal at this stage. The goal is for her to experience everything about food, texture, flavor, temprature, smell etc.

LOGO (speech) at 1pm and swimming at 2pm. Tova hates the swimming pool!! We gave it a go anyway, she hated it! Nissim loved it and tried to drink the pool dry! I dried my poor exausted Tova and put her in her pram. I think she was asleep before her head hit the 'pillow'. Nissim on the other hand was so hypo, he kept crawling away from me laughing up the corridor! Such a cute little man!

We fed Toki at 4 when we were back at the hotel. It was quite a relief to feed her water and know how much actually went in (the only good thing about PEG feeding).

Everything is about food, thank goodness for the walk to and from the hospital. I got so hot walking up the hill today that I was only wearing a T-shirt in -3c... crazy.
There was light snow today and the river was frozen along the edges. Maybe it will snow for real tomorrow! Yuval has never seen snow!!!

It is a public holiday here tomorrow, so no therapy, only play picnic.
Everything is closed in Graz on public holidays and Sundays, the only thing to do is wander around the forest and hills and EAT! So we are going out for breakfast with the NZ family (we have to walk through the forest up some hills to get there).

Tova is still in good spirits and seems to be enjoying food to the max! Yuval is feeling less stressed because of how amazing Tova was with food today. I am feeling great, but very tired as I keep waking up at bloody 4.30am for some stupid reason.

Not sure how much sense I have made today, I have written alot of this with my eyes closed as I can touch type... my brain isn't working well from tiredness. . . .  .

I am loving the warm messages from lovely friends on facebook and in email, thank you! Sorry if I am a bit slack in replying, but please know, I do read them and love reading them.

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Jan 4th 2010

Tova and Nissim were both exhausted and asleep at 6pm! My eyes are also shutting as I type and it is only 7pm.

So, today was interesting. We met the other families, there are about 6 kids in our group. Some families don't speak English so I don't expect to get to know them too well with my very limited and mostly useless amount of German. I can say very helpful things like 'Good dog' and 'Sweet small child' oh and 'OUT!' in German.
Other than the NZ family there is one other English speaking family from Ireland. This family have 18 month old twin boys who are at home. I can't imagine how hard it must be for them to be away from their boys.

We met all the specialists today in a little room, Nissim enjoyed playing on the floor with toys and was extremely impressed when the doctors brought in trays of food and put them on the table for the kiddies to do what they pleased with. Tova rained lots of food on Nissim, who graciously vacuumed the floor with his mouth. No other bubbas touched the food. Tova touched everything, as the playzone girls know, Tova loves to 'cast', and cast everything onto the floor she did.

After this meeting we went and had Toki weighed (8.5kg), measured and fat content assessed by Petra one of the PhD students. Then a meeting with another doctor to talk about the history of Toki, then to the play picnic!

Play picnic happens every day at 12pm until 1pm. It is in a small room where they put sheets on the floor and place plates and bowls of food all over it.  Nissim was driving me crazy so I set him free in there first. The rules are 'the kids do what they want', so I took his pants and long sleeves off. See photos for the damage this little boy did!

Tova played with food in her hands (lots more casting food aside) and licked a few things. But most of the time she was absolutely mesmorised by her little brother. Nissim ate EVERYTHING, and even stole food from other babies.

One little girl got some food on her hand and FREAKED OUT for the rest of the hour, the Irish mumma said her daughter would be the same if food touched her.

After play picnic we cleaned up the kiddies as much as possible and went to see another doctor, Marguerite. She told us to skip the mid day feed today! Tomorrow we skip the breakfast feed and the lunch feed!!

At home around 3pm Tova was feeling hungry (her feed was due at 4pm). Yuval told me he had a headache, so I asked him if he wanted a drink of water. I looked over at Toki, who signed (makaton) 'drink, more, more, drink'...... poor bubba. So I gave her a drink from a cup (using her mouth). She had her normal 'sip' and seemed to be happy enough, her version of a sip is really just licking the glass and getting water on her lips.

Yuval is starting to feel a bit of stress for Tova, I think reality is starting to hit home for him. His little princess may suffer a little and possibly lots, over the next days, that is very hard for him to see. It is very hard for any of us to see.

Tova didn't tolerate her 4pm peg feed so well today, I think because her stomach was empty for so long and I possibly put the milk in too fast. Tomorrow I will do it slowly.

I can't believe Nissim hasn't vomited after the amount and variety of food he has eaten today. I am so glad that he is involved in this adventure. The doctors say that he is worth two specialists. Little man!!!

The head doctor, Marguerite is Jewish and has told us that the Shull doesn't have a  service every week, she is going to get some dates for us. It is nice to have someone understand some part of our culture.  They have arranged it so that the play picnic will never have any piggie meat just to make things simple for us all!

So here we are on day one. Wow. The reason we are here has begun, it still feels somewhat surreal.

Tomorrow we have Occupational Therapy, Physiotherapy, Swimming, something called LOGO and play picnic. Each day there is therapy for Tova (I wish we had this at home). If nothing else Tova is going to get some amazing therapy while we are here.

It has begun, we now wait, watch and work hard!

Ahh, the first day of feeling normal.
As many of you know, I am a seasoned international traveler and have never suffered jet lag, until now!
Wow that was hard work. I am happy to say that Tova and I have caught up to the boys and we are all on the same clock.
Yuval, you have been amazing holding us all together for the past few days, thank you!

We did allot of walking again today, which feels good. The kiddies were good in the pram for such a long time.

We found the shull, it was closed. Perhaps we will go there another time during the week. Maybe we will get invited to shabbat lunch somewhere!? The shull is fairly new, from what I understand it has been rebuilt on its original location after being destroyed when the Jews were banished from Graz many years ago. All the buildings around it are old and it is on the banks of the river that runs through Graz.

Just up from the synagogue is a building that looks like a slug, we had lunch there. Yuval was in heaven because there was a buffet. Nissim crawled around the floor, cut his hand on some broken glass (didn't cry) and ate half of Yuval's lunch. Tova cried and fell asleep in the pram.  The restaurant was filled with kids and smokers, a very strange combination after living in a country where you could be in trouble with the law for such things. We sat in the non smoking section.

Because Tova had fallen asleep we were able to go to the tunnels leading to the elevator that takes people up to the top of a mountain plonked right in the centre of the city. Tova has a big issue with dark underground places (I never park in the underground carpark anywhere). So we did that, had a walk around up the top and saw how grand Graz really is and  then went home.

We just met the NZ couple who arrived last night with their 11month old little boy who is also here to learn how to eat. They are staying up stairs, they are smart and brought the nanna with them. I wish my mum was here!

Tomorrow it begins!

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Tova and I are feeling almost normal today. I think tonight will be the first full nights sleep for us all.

Yuval and Nissim haven't really had any problems adjusting.
We said goodbye to the NZ family who are on their way home via a well-deserved family holiday.

We went for a long walk today from the hotel to the edge of the town and back, via the supermarket. There is an amazing supermarket called 'biomart', it is everything like a supermarket but is in actual fact a massive health food store! We got a few things but it is a bit out of our league (price wise).

Yuval has been inventing his own language and calling it German, people seem to understand him or perhaps they are tolerating him, whatever it is, it is funny!
My very tiny amount of German (from school days) is helping a little. I understand allot more than I can speak, knowing how to count is extremely helpful. Anyway, everyone speaks English.

Our walk to the shops is mostly down hill but on the way home we have a massive walk up the drive way/street that has been very interesting with the double pram and shopping. Yuval and I were going to get gym memberships while we were here for the month, but have now discovered that we won't need to.

There is a NZ family arriving tonight with their baby for the weaning program, they are staying in this hotel too. I am not sure how many other families are going to be in our group but I am looking forward to Monday and finding out.

No snow yet, no rain and not that cold. Yesterday was actually pleasant with a bit of sunshine and no wind. Tassi gets colder, perhaps because Tassi has freezing wind?

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