The Tovington Post

Wonderfully there isn't much to report today.

We went to breakfast this morning at the main hotel. Ordering was as hard as ever, they were as rude as ever and the walk through the woods was as magical as ever. They could have sworn I ordered bacon in my omelet! hmmm (I even apologised for being rude yesterday).

Nissim ate so much food this morning even we were amazed.

Orla, Ben and Lucy came to visit and feed the animals this arvo. Lucy is having a hard time with eating. Not sure what they are going to do. I am glad we are here for them and that they are here for us.

Tova isn't eating much, but she is eating. I have been giving her some water in her PEG about twice a day at the moment as she has been so sick and she drinks so little. Other than water she doesn't 'eat' with her PEG at all.
She is thin, even her anklet is falling off and her size 1 trakies are so big that when she stands up they fall off. HOWEVER, she is happy, energetic and in good spirits.

Feeding Tova takes up our entire day at the moment (still with a syringe not spoon). We feed her anything from hourly to every three hours at the most. I know it is going to be very hard to keep that up at home when Yuval returns to work, but I would much rather be doing that than tube feeding my princess every 4 hours with no end in sight (please remind me that I said that when I am going crazy at home).

Yuval and I are counting down the days till home. We will be back this time next week and we are so very much looking forward to it. There is so much we love about home, lovely water, sunshine, friends, family, our house, gym, and so much more.

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Tova is back to her new normal self. Grumpy, frustrated, demanding and happy! She has even been eating with some persuasion. Yuval and I are so relieved!

Nissim, who had stopped falling so much this past week, made up for it today. It is horrible to see him fall on his head so much, a helmet is the next option.

The weekend in Graz with a healthy Tova and an as always happy Nissim! What to do with ourselves? Everything in the universe (universe of Austria) is closed on Sunday, so anything we want to do that involves consuming has to be done today, Saturday.

I thought that finally I would get a chance to do some retail therapy! I went to have a warm shower (never any hot water here) but alas there was only freezing water. I called the main hotel who after much fussing around I ended up hanging up on (perhaps I am a bit fragile after such a crap week?) - I just wanted a shower! Eventually Yuval convinced me to get dressed with out a shower (I hate that feeling)..

The mall was ok, it was nice to see something different even if we didn't buy anything (other than food). The kiddies were so well behaved, I wish they were like that when I went to Chaddy (in Melbourne).

NZ start their journey home today. They left us heaps of food and odd n ends that they didn't want to take back. I suppose that we will be leaving an array of things at the end of the week too. It would be great if new weaning families moved in before we leave, so we can donate our 'extra' stuff.
We are going to have lots of extra room in our bags now that we don't have to cart around all Tova's PEG milk!

I am so excited about things being good again.
Tova has been loving what my friend Bec (hi Bec) calls 'magic pudding'! Chocolate is the key! And fruit, Tova loves fruit..

Perhaps we shall do the old 'walk thru the woods for breakfast' thing tomorrow morning. I am thinking that they might not be so happy to see me after I was rude to them today. Oops. Sorry my Yuvie, maybe I killed breakfast?

A big thank you to all the supportive emails while we have been sick and scared!

Well thank God! Tova seems to be feeling much better today. No blood test because it is obvious that she is improving. Spots are going and Tova seems to be coming back to us!

Thank God!

Tova has spent the last 7 days sleeping! The next 7 days she is going to have to work hard as most of the other families have gone home now, freeing up the physio and OT; look out Tova, therapy twice a day!!!! That is what you get for taking a week off!

For me it has been a week of worry and sickness. My mind went to stupid places and I was feeling quite down.
Yuval and I both get down when T is down, and up when she is up.
We are all feeling up today!!!

We rushed to the hospital this morning for our 9.15am appointment with Eva (and even made it almost on time) to show off our almost normal Tova. Eva was impressed too!!

We even went to Play Picnic today. Tova LOVED it, I put her on the floor she smiled from ear to ear.

Of course Nissim enjoyed himself, first thing he did was polish off a plate of cake (4 pieces). I am so proud of his strength and his happiness. What a little champ! He is such a delight. We are enjoying him so much.

The NZ baby had his PEG out today! Wow, well done Ollie and happy birthday!

Next week it is just us and Lucy from the original group, not sure of other families there full time.

Today... Pretty much a completely crap day. This is quite possibly our lowest point so far.
Tova has more spots today, much worse than yesterday.
I am feeling scared, angry, helpless, scared... She is still tired and feeling sick. She has a sore throat and a cough.

I wish we had never come here (But in reality I wouldn't have done anything differently). Very confusing.

Little princess Tova didn't eat anything for breakfast, we think her throat hurts too much and she generally feels too sick to eat.

Back to PEG feeding to give her the power to kick this bug in the f*#*ing arse! OMFG, I don't want this to be happening. I want Tova to never suffer again. She has suffered enough in her little life. Stupid sickness! Leave my baby alone idiot virus!

After a second opinion on the spots we are slightly reassured that they are 'only' to do with the virus she has..... hmmm..
Eva was with the doctor when he examined Tova, it was nice to hear her common sense and compassionate words. She is extremely lovely to Tova, talking to her in a soothing way (in German) and showing us that she truly cares.

Tova was admitted to the hospital as an inpatient today as she isn't improving fast enough to make everyone 'happy'.
After another blood test coming back 'normal' we all decided that Tova would be better off at home with us. No admission. What a ride!

We are home now with our spotty Tova (spots aren't C.pox looking, more rash like).

The NZ baby has a fever and has been admitted for the night. Happy birthday for tomorrow!

Basically it has been a week from hell and we are tired, scared and sick of wishing that tomorrow will bring us new hope.

Finally this evening there has been a small change in Tova, she is less vacant and a touch more focused. We even got some magic smiles from her. Is she coming back to us? All of a sudden PEG feeding isn't so bad!!
We haven't been feeding her full PEG feeds, just what we feel is enough to give her some fight.

She still isn't wanting to eat more than a couple of mills at a time.

Today has been emotional. The entire week has been emotional. The entire TRIP has been emotional.

New ticket booked for a little bit later than original. Home, we miss you!

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I woke up this morning feeling heavy and drained, however this is a billion times improvement to how I felt all of yesterday. I felt grateful for the relief.

Tova is still feeling sick and today is covered in spots, not chickenpox looking spots, more like an allergy rash. We took her to the doctor, who agreed the spots aren’t anything to worry about.
Tova had another blood test day. She is normal according to her blood.

She isn’t normal according to Yuval and me. Today is her 3rd day of not eating much and 5th day of being sick.
All Tova does is sleep and be floppy, it is scary and upsetting.

We gave her milk via the PEG today as she has only had about 50 mills of food over the last two days. Hopefully the PEG milk will give her the energy to fight the bug she has.

The doctors have asked us to stay for an extra week, so there will be a week 4 for us. I have to change the plane ticket. It is hard because I am missing home so much, but of course, I wouldn't have it any other way. This is the best place for Tova to be! We are lucky.

I weighed Tova today, she is now 7.83kg. Perhaps that is because of all the work the laxative did the other day (and that she isn't eating).

Nissim is great, though he is teething with 4 teeth at once, last night he woke about 5 times. Tova also woke many times. Yuval and I are tired.

CNN has finally come back, giving us one TV channel in English.

Seriah the princess I wrote about last week seems to have vanished, not sure if she was eating.

Lucy, the Irish girl still isn't eating, she has however started drinking a fraction of chocolate milk. My heart breaks when I see her and I find it hard not to cry. She looks so sweet and innocent and thin. It will be worth it though, she will eat and no one will ever look back!

The NZ family are going home on Sat morning (the day after his first birthday), with an eating baby.

There are three new families in the group. I haven't been in the picnic the last few days to know much about them. One family are Brittish/Bulgarian and their child doesn't have a tube, but the doctors at home are saying that is the next step, not if Graz has anything to do with it! Incredibly the mumma found out about the website http://tubefedkids.ning.com/
last Sunday and started Graz weaning program on Monday.

Mum, we are missing you and all your help.
Playzone girls, we miss you!

I hope, as I do every night, that tomorrow will give us back our normal Tova! PLEASE!
She did manage to eat a meal tonight, about 60mils all together perhaps. So, that is a great sign.

Thanks for all the well wishes too. As I keep saying, we are pretty lonely here, so all emails and messages are very helpful and appreciated!

No photos again, as all I have been doing is worrying.

This is the worst week ever.
We are very worried about Tova.
I am sick with what Yuval had the other day.
We didn't go anywhere or do anything today. Tova and I have been in bed all day.
The boys just went to the shop and got me some lollies and Tova some chocolate pudding. Thank god for the boys, Miss T actually ate a little bit of the pudding.
Please god let this be a sign of things going back to good.

Little Tova is sick and has a temperature. No wonder she has been so flat all weekend.
We also asked the nurse to give T a suppository, it worked, but Yuval and I suspect there is more in there. She is now on Panadol and laxatives. I want her to be well and feeling fantastic. My heart breaks when I see her suffer!

She is sleeping now. All she wants to do is sleep. Last night she slept for 13 hours.
Hopefully sleep will fix everything.

We went to physio this morning, we had another lady (not Eva), who is equally as lovely. Tova fell asleep in Physio while they did some cranial therapy.
We missed Music therapy.
In OT the therapist put T in the swing but Tova just couldn't get into it, she ate and fell asleep.
We canceled Speech and went and had her temperature taken, that is when we found out she was sick (not just adjusting to eating).
So home we went. No play picnic today, well Nissim went in for about 10 mins before we went home.

We are giving Tova magic water in her PEG as instructed by the doctors. The doctors aren't worried.

This evening Tova isn't interested in food. But she isn't as hot as earlier. The laxative has worked. I really hope that tomorrow she is perfect!

Einstein is on, she is almost enjoying watching it.

The sun is shining today. The snow is sparkling and looks pretty.

Sunday in Graz means boredom, at least that is what it means during the winter with no car and two babies.
Not sure what is up with little T but she is tired again today. She spent the night in bed with us pushing me around as she likes to sleep sideways. Maybe she is tired from bugging me all night.

During the night Yuval gave her some magic water via her PEG, first PEG use in a week. She settled after that, but woke up this morning sad. I just gave her some laxative via PEG (while she is sleeping), maybe that is her problem.. We wait and see.

I am pretty ready to come home. The snow, once beautiful and exciting, has now become cold and restrictive. It is hard to do anything because it is so cold out side and difficult to take the pram through the snow. Would be nice to have a babysitter so Yuval and I could go do something fun.
I know we aren't here for fun, but it helps one to stay positive.

It isn't all bad, we are warm and up here at the guest house the falling snow looks pretty.
We fed the animals this afternoon, Nissim and Tova like watching that. The deer thingy got upset with a goat and they hit horns, it made a great clanking sound (like two ninja poles).
Yuval tried to 'ski', fell over and became freezing, that was the end of that.

Both babies are asleep now at 6pm, I must be dreaming.

I hope Tova is back to normal tomorrow. We worry when she is so flat, it is almost as if she is depressed. She has eaten a good amount of food today, which is a relief, she is so clever. I discovered that she LOVES pureed peach with passion fruit, she ate about 100grams of it. I love watching her eat, the little mouth looks so cute with food in it and the little lips smaking together. Yum, I could eat HER!!

I am happy it is the end of the day. Looking forward to tomorrow and all that it will bring.

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Not the easiest day.

All the babies stayed up way past their bed times last night, which was annoying as we all love our time out around here. Tova woke up tired this morning and wouldn't snap out of it. So after play picnic she had a blood test, didn't cry at all (I sang to her). The blood tests came back all normal to my relief.

Yuval also woke up feeling tired and also couldn't snap out of it. He and Tova are both having a shluff now we are home (it is about 3pm). Nissim and I are eating everything.

Breakfast wasn't it's normal fun self. The grumpy waitress was on duty today and when we asked for 4 orange juices (there were 5 adults, so not really a big ask), she only brought us 1, when we asked the owner who speaks English to ask the waitress in German for 4, again she only brought us another 1. The same thing with the eggs, and the few that she did bring were still raw.. hmm.. I ended up not having breakfast; not really a problem as I haven't stopped eating the entire time we have been away.

Play picnic was uneventful, Tova had no energy, Nissim was asleep in the pram and I was worried something was wrong. Tova ate, but not as much as normal (we all have those days apparently). Anyway, her blood test shows that she is a normal healthy little girl.

It was nice being reassured by Marguerite that everything was ok.

We got a taxi from the hospital to home as Yuval was feeling like all his energy had been sucked out of his body (Marguerite said 'it is just Shabbas', perhaps she is right).

We possibly won't have the PEG taken out here in Austria, not because Tova isn't a superstar, just because it is a long flight home with allot of time adjustments once home too. No big deal, it will come out sometime in the near future.

Tova had a big sleep this afternoon, I am hoping that doesn't mean a very late night as I am ready for bed now at 7pm, Yuval is already asleep. I have a feeling this is going to be a long night. Even Baby Einstein doesn't work these days with our new Tova.

Nissim is a good boy and fast asleep.

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The simple fact is that Tova eats food only with her mouth. She has NOTHING via PEG!!! Is this a dream? Miss T is maintaining her weight (even if it is a low weight), she was something like 8.10 today, Nissim is quite possibly 9 point something. Yuval and I are probably 9 point something more kilos than when we left Melbourne, I had to get Yuval to help me do up my jeans this morning.. hehe.. Fat!

Tova eats and drinks with her mouth, like the rest of us! I know I just said that, but holy cow, I might just be saying it over and over again for the next ages to come! If we had stayed in Aus it would have taken years and years for her to eat. My brain doesn't understand and I have no words for my lack of comprehension how the rest of the world don't have eating clinics. Seriously it isn't complicated. Come on Australia, you are renovating the RCH, why not include a weaning clinic?

So our second week hasn't been harder than our first (thank god). There are families that are having it very hard this week. I feel so much of their pain and admire their strength. I haven't seen anyone cry in public (I have been close on a daily basis).

We had lots of therapy today, PT (with our to-be-kidnap-victum Eva), Speech (quite good today), not OT (she is sick) and play picnic.
In play picnic today, I sat back and watched. I was sitting with the Irish mumma, Orla, mum of Lucy, they are having a tough week and Orla is amazingly strong (at least in front of me). Yuval was being magic with Tova as usual and she ate heaps.
Nissim made his record amount of mess, he went to every single bowl and plate and experimented with spilling, tasting and touching. He trashed the place!

We are going to play picnic again tomorrow (sat), recommended by the doctors as Marguerite wasn't there today and would like to talk to us tomorrow. Perhaps she will talk to us about removing the PEG? We can only hope.

One little boy left today as he is eating perfectly. I think he is a local (from Europe at least).

Next week is our last week.
We are starting to miss home.
The only thing we have bought so far is food, so anyone expecting presents, sorry, all we have to show for this trip are our new larger sizes and an eating Tova.

We will probably come home with a Tova eating from the syringe and take some time to transition to only using a spoon to eat. That is ok, the goal of eating has been met! Tova eats!!!

We are going for breakfast with the NZ family tomorrow morning. It is even more fun with them and even more eggs ordered!!

Home in just over a week I suspect. Ahh, no more hotel cleaners doing most of my house work!

Tova eats!

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Day 11 already, that went fast.
Breakfast in the main hotel was fun. Between us we ate 7 eggs. The staff always look at us a bit funny when we order so many. There isn't really much else to eat, there is usually a small buffet which has some fruit (the standard of the fruit isn't what we are used to in Oz), cake, cheese, yogurt and ham; so eggs it is.

On the walk back through the woods Nissim fell asleep in Yuvals arms (no pram access along the track in the forest) and remained asleep when he was put in his cot. So Tova and I went to play picnic alone. It was fun to walk to the hospital and back alone, the hill was a bit hard, but not too bad as there was only one baby in the pram.

Play picnic was good, Tova ate a little with the spoon and lots via syringe (close to a jar of baby food). She also had a good go of the sippy cup with water.

Tova has become more demanding (and loud) and has made quite a few changes since eating (developmentally), Hannes (one of the specialists) said that she has to discover making her own fun. We have spent so much time and effort doing so much for her because she has needed it, that our next challenge is to help her help herself.

All the other children are making progress. I think one already has his PEG out. We look forward to that day and hope it comes very soon! It all still seems so unbelievable.

When Tova and I got home Nissim had only just woken up, giving Yuval a nice break while we were gone. I don't remember ever spending so much time with another adult in my life. Yuval and I have been together 24 / 7 for over 2 weeks or is it 3? It has been good, we are a good team. However, it is always nice to have some personal space.

Today I asked about how the weaning program started. Apparently it was Marguerite who started it because of a child in the hospital (about 20 years ago) who wasn't eating and therefore tube fed, she weaned the child and that was the start... That simple. The hospital realised the need for it. The rest of the world will follow for sure! Eventually!

Tomorrow we have more therapy and play picnic, we might cancel speech again tomorrow (we canceled today) because we have been so spoiled at home with our speech therapist Mary, no one else can compare.

There hasn't been any new snow, but the old snow doesn't seem to be going anywhere. It is still freezing out there and very hot inside.

No photos of play picnic today, I didn't feel like it. There are photos of the kitty cat that lives here, he has become my new mate (even slept on my bed, and rolled in the snow for me) as I miss my cat lots, and Zev even a little bit. I hope they are coping with the heat in Melbourne.

Nissim needs to stop falling off everything before I kill him. He is the clumsiest boy in the world, I can't believe he doesn't have a brain injury from all the head crashes.

We are all pretty happy as Tova is doing so well. Our second week seems easier than our first week, I hope it stays that way.
Tova lost about 10grams since yesterday, I'm not worried, I think it is just because she ate earlier than usual before the weighing.

Tova is eating so well. What a brilliant girl!

This place is incredible. The entire place looks like magic fairy land, with white lab coated foreign speaking people that cast spells on children whom are PEG fed.
Lucy is one of the three older kiddies that simply refused to eat. Lucy wouldn't even touch food, until today. Today this amazing little girl ate 8 spoons of baby food! She has some very proud family today, my eyes filled with tears when they told me.

Tova hasn't had any PEG feeds since Sunday night. She is getting better eating with a spoon, today she ate a good sized portion of mash and gravy in the play picnic (yep Beck, we have LOTS of washing each day).

Her weight today was 10g more than yesterday.

The doctors cooked pancakes for the parents today, Nissim thought he was a parent. He had about 10, no kidding! People have been pointing at his tummy, because it is MASSIVE, he is such a little clown.
He has been falling over allot the past few days, today he even managed to fall off nothing and hurt himself, not sure what happened, but he just kinda plonked on the floor. Poor little man.

Tova had a bit of a hard night last night and woke a few times. We aren't used to that, so we are all very tired today.
She is allowed to eat 24/7, meaning, if she is hungry at 2am, someone has to get up and feed her.. Maybe the PEG wasn't so bad.. hehe, only kidding of course. Eventually she will eat enough so that she sleeps through the night (perhaps tonight).

We only have play picnic tomorrow, so we will go to the main hotel for breakfast, that is always fun and chaotic. It is nice to have to walk for breakfast and then home again after eating too much.
It is all about food!!!

Tova eats!

Miss T has put on 30 grams!! Tomorrow I suspect she will have put on more. She is eating HEAPS!
I knew we would get Tova eating, but I didn't know it would be so fast and relatively easy. Maybe only steps forward from now on and an easy second week? Let's hope so.
We still need to introduce the spoon as the only eating method, but for starters she is doing great things eating from a syringe.
For dinner tonight she had an entire jar of baby food (approx 100mills) and for second dinner another one a few hours later.

Not much else to report. Nissim is cute as ever, Yuval is wonderful as ever. It is still freezing in Graz. I think our pram is going to fall apart by the time we leave here, it wasn't designed for snow.

Thanks again for the emails, I get excited each day to see if I have new emails. It is a bit lonely here with no friends to visit or gym to attend. I miss understanding everyone and wish I listened more in German class at school. Yuval is still inventing his own version of German and I am sure he will be speaking it for months to come to bless the ears of everyone back home.

Enjoy the photos of much the same.

Nissim is almost a walking boy. He has been transitioning for the past week or so and now mostly walks with the occasional crawl. He does lots of falling still, but more coordinated falling than a few months ago. He has also started to bite everything including me, mostly me actually. People have commented that he is a happy boy and he gets lots of laughs from his audience and fans. It is nice to see him so happy.

We had an early start today, we were late.
Physio, Occupational therapy and Speech. Music therapy was canceled. Of course there was the play picnic at 12 too.
Physio with Eva was fantastic. Eva is a remarkable therapist and person. Apparently Tova and Nissim (Nissim is almost always included in therapy) speak fluent German, as they understand every word Eva says.
Eva has a special way with Tova, firm yet compassionate. We would like to take her back to Australia with us (we would have to fight the NZ family for her first though).

Tova has been in great spirits all day, almost her normal self. Big news is that she maintained her weight over the weekend. Friday she was 8.12 today she is 8.12! This confirms that she is eating. Tonight we give her NOTHING via the PEG, we gave her 50 mills of water and 50 mills of milk last night.

Eva showed us how to feed Tova with just one of us. Much easier than the crazy process we have had to do together every two hours. Perhaps now we can take it in turns, all though, Yuval seems to have taken the biggest role in feeding Tova at the moment. I suspect that is why Nissim has been a bit jealous; he had become accustomed to being Yuval's number 1 man!

Seriah still isn't eating, but walked cautiously into the play picnic and picked up a chocolate today. Oh and that reminds me, Nissim stole a chocolate off a baby today, and tried to take the sandwich from the NZ mummy.. he is so funny.

Yuval and I have bought more food. We are all eating heaps, that is the idea. Apparently babies of dieting parents take longer to eat than those of piggie parents. This is why Tova is eating so fast!

So, Tova is eating! From a syringe, but eating! We will slowly (or quickly) move to using a spoon, but who really cares how she eats.

Today has been good.

We went for breakfast at the main house today. It is a fun walk through the woods in the snow. We can't take the pram so we carry a baby each. The owner of the hotel is always happy to see Nizo and gives him a gift each time we see him.

Again today was a focus on Tova and getting her to eat. We didn't do much else. However, the day has gone pretty quickly and Tova is a happy little girl.

Both Yuval and I are feeling much less stressed as we both get a hang of the rather involved feeding Tova Process.
We lay Tipi on Pillows, I hold her head and sing and Yuval squeezes small amounts of pureed food from a syringe (3 mill) into the little mouth. This is working very well.
Tova has had about 30mills of food every 2 or 3 hours. We also spend time playing with spoons of food and the sipi cup. She lets us know when she is finished by crying and trying to get away. We don't force her.

I made mashed potato for dinner and some fish, Nissim loved it. I was being a piggie with a massive dessert spoon of potatoes about to put it in my mouth when a little Tova (whom I was holding) leaned forward and took a mouth full. WTF? This is the first time Tova has ever eaten anything I have made and the first time to take a mouth full. Who is this eating child? Truly amazing.
I feel like my mind is playing tricks on me and for every good thing I keep reminding myself that we are in a roller coaster and who knows what tomorrow will bring. The hospital team have said that the second week is very hard and for every step forward there are usually two steps back.

When I bathed Tova this evening I nearly vomited from seeing how thin she is. She is eating, but not enough to sustain her weight.

Last night we waited for Tova to fall asleep and then gave her some magic water and a small feed of pediasure via PEG. I think we may do the same tonight, even though for dinner Tova had about 30 mills of water (via Mouth) and 50 mills of puree veggies (via Mouth).
I am sure that after Marguerite hears how well Toki is doing she will tell us to stop the night feed again tomorrow night.

Tova has a new game with Yuval now, she demands to be put in her high chair to play food games. Food seems to have become something fun for her. Wow, what a relief.

The NZ family upstairs are also amazed at the progress of their little bubba, who is also eating little amounts.

This entire week has been unbelievable. I can't believe we are in the snow in Austria. The other side of the world from home.

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Snow, snow, snow, snow and more snow.
Baileys on snow.

I have had fun wandering around in the woods (snow up to the top of my boots) taking pictures and feeding the farm animals apple.

Nissim hates the snow, and shoes. He cries if I put shoes on him and cries if I put him in the snow. I have a fantastic picture of him with shoes on and in the snow! Not happy at all! I am mean! hehe.

Yuval and I haven't bought anything in Graz so far, other than a massive amount of food. I hope to change this and eventually go to the indoor shopping center for some retail therapy. We may go to Vienna one weekend with the NZ family. This all depends on Miss T and how she is feeling.

Nissim is enjoying watching TV in German! He is also an expert volume controller and channel changer.

No hospital today. It is a nice break not having to schlep through the snow with the double pram. Nice not having to talk to anyone too. Today has been a focus on Tova at home.

Tova has actually opened her mouth for water today. Astounding. She has also been in a great mood, laughing and playing with her Aba. She has eaten about a teaspoon of pureed food every 2-3 hours today and had quite a few sips of water. It is mind blowing to see her actually open her mouth for water and put her lips around the sippy cup.
Even with all these positive things happening, today has been hard. Tova is very skinny. I keep thinking to myself 'What the fu#k are we doing, and by choice?'.

I got an email from a friend today that reminded me of when we watched Tova learn to breath in the NICU. That took five and a half months and was exhausting, yet learn to breath she did (thanks Laura)!
I remember when Tova was taken off the tube and put on CPAP, we were so proud and happy, only to be crushed a few hours later when she had to be intubated again. This eating process is right up there with that. We worry now because food sustains life and we are depriving her of that. But, yes we know the success rate this Graz clinic has and are confident we won't bring their stats down.

I am also anxious to see them break Seriah (the princess that can't even have food touch her). She is completely normal in every other way, not delayed in her development or anything, just a fruitloop when it comes to food. I just can't see how they will get her eating.

Again I have to thank everyone that has written to me. The emails I am getting are helpful and very much appreciated.

So now I drink my Baileys on snow and relax as my children go to sleep.

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A new velvety blanket of snow greeted us this morning, and to Yuval's delight, it was still snowing. It actually snowed for the entire day and is still snowing now in the evening. I just went outside to take some night shots and the snow has become so deep it is up to the top of my snow boots!

Nissim is living off chocolate, cake, candy and biscuits. He had never eaten any of these foods before Austria. I hope it isn't hard to get him back on track once we get home.

Tova had Physio with possibly one of the most incredible physiotherapists in the world, Eva. That was a great session. She got Tova to eat about 10 mills of pureed fruit. She also was concerned about Tova not eating anything so ordered a blood test. OT next and then we went to speech therapy. It is incredible having therapy every day.

The blood test was a finger prick, it wasn't as bad as I imagined.

The specialists were concerned with Tova's lack of energy and gave her 150mils of energy water in her PEG, and fed her another 10 or so mills of pureed fruit (via mouth). Tova fell asleep on the picnic floor.

She had a second blood test done.

Comparing blood tests showed that Tova was feeling particularly crap in the morning and the magic water in her PEG had made her feel much better in the afternoon.

We have some magic water for the weekend and if we want to we can decided to give her a night feed (PEG) of milk. I think we will.

Our new plan of action is to use a little 4 mill syringe filled with her puree and slowly get her to eat about 3 syringes every 2 to 3 hours (via mouth). This seems to be working so far. It is all about trial and error.

It is a pretty horrible feeling, but we know that in about 3 weeks our blog will read 'PEG out, Tova eats! Coming home!', so it is worth it.

Thank you again to everyone who is emailing and facebooking us with such support! We all appreciate it.

Not sure about going to shull tomorrow. The snow makes everything difficult with no car. It was nice having someone say 'Good Shabbas' to us in the hospital (Jewish doctors).

Most parents are looking exhausted already and it has only been 5 days. Next week it is supposed to get harder. They say that it is 1 step forward and 2 steps back. But by the end of the three weeks, it is an eating baby!

There are rumors that Australia will be the next country to have this clinic!!

Yuval has been eating cups of snow with cordial. He is in much better spirits today. We all are after Tova having magic water and little amounts of food. Thanks to Eva the physio.

There is a long road to go.

My husband and my kids are incredible!

It feels like we have been here for all eternity. It is cold, dark, slushy and wet. Yesterday the snow was beautiful on the roads, today it just looked dirty and got in my way. I don't mind it on the trees and in gardens, it looks beautiful there, but it was annoying to have to try push the pram and walk through it.

My soul is having a bit of a headache today. I knew that starving my child would be hard, I mean I knew those words, and I had said those words many times in preparation for this process. But now I feel them.

Tova has eaten tiny amounts of food and little sips of water today, but we can see her energy levels going down. She still has smiles for us, but she isn't the same. She hasn't lost too much weight, about 200 grams. Nissim is heavier than her now.

Yuval has had a very hard day today.

I know there is a light at the end of the tunnel, and the specialists are very happy with Tova. They say she will eat. She is ready!

Tova isn't getting any PEG feeds tonight. Her last PEG feed was last night at 8pm. Tonight after she goes to sleep she is allowed to have up to 200 mills of water with sugar in it. That is it!

They are lucky they have a 97% success rate or I would be on the first flight home.

The hospital specialists are amazing and supportive. We are lucky to be here!

Nissim had fun as usual eating everything we don't want him to eat. He again was complimented by the specialists who said he was worth an entire team of specialists! He is amazing. Such a cute little man. His walking is getting much better too.
Nissim made a friend with a baby girl his age today, they met some clowns and laughed together (photos below).

The walk up the hill to the house is getting easier every day. The goats that bleat at us at the top are getting louder and more desperate for us to feed them, they are so funny looking. I will take some pics soon and upload them.

Tova is in bed watching Einstein, her favorite show.

It is a few hours later, Tova can't sleep because she is too hungry. I can't give her sugar water till she is asleep.

Yuvie and I just tried to feed her, she isn't really interested. She had a few sips of water.
I just gave her 40 mils of sugar water (PEG) to settle her. I hope she sleeps now.

Yuvie and I have swapped moods now. I was strong and happy today and Yuvie was falling apart. I am the fally one now and he is feeling fine!

Good times!

I am sure Tova thinks we are idiots, she is telling us what she wants, we have done it a billion times before, yet for some reason, unknown to her we have all gone stupid.

She is sleeping.

Ok, so after a peaceful night of sleep Tova has woken in a good mood. She had a tiny sip of water, but isn't interested in eating.

There is a fresh blanket of snow out side. And it just started to snow. This is our first snow during the day. It looks beautiful.

I hope today isn't going to be as hard as I imagine it to be.

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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Day 3

07-01-2010

Day 2

06-01-2010

First Day of Therapy

05-01-2010

First Few Days

30-12-2009

Dear family..
Well.. what a long set of flights we went through, stop overs and transfers and lots of food everywhere.. We had access to business lounges which has couches, computer access, TVs and food and drinks- as much as u like ( and boy did i like )
On the plane trips the kids were great but took turns in being awake... I was in charge of Nissim and Shosh was looking after Tova..Business class rocks. Big comfy seats which recline almost straight and heaps of leg room and priority service.. very nice.
The kids were good but towards the end we had all had it especially Tova.. poor princess.
We are staying in this very old style accommodation guest house with lots of space inside. Most things in our room are built out of sturdy wood . We have a kitchen, bathroom with a deep bath and a separate room for the kids..TV sucks all German and then there is CNN
Its like a farm here but much cleaner and smaller and it does not stink like a farm might -  There are animals around behind fences. Lamas, cows ducks peacocks a cat and more. Its at the top of a steep windy road. There are frozen bits of water and bare trees and old style houses with big roofs and its all very different and beautiful.
At the moment one other family is here and they are going home on the 2nd of Jan with an eating child..
They say there were 8 families in the group that just finished- all went home with an eating child..
This is a mind blowing trip... we start on the Jan the 4th.
So  far Shosh and Tova have taken a little longer to adjust to the new time zone and are jet lagged..
A few weeks ago it was minus 15 here.. the last couple of days have been have been cold but not bad at all.
Inside is full of heaters and very warm and snug.
Today we went into the city on bus and tram and bought lots of supermarket stuff and also bought Internet access which is great..
But we missed the tram on the way back and had to walk for ages with a pram and big load of shopping and then up this massive hill to get to our guest house. Lucky our kids are tolerant and forgiving.
We are all hoping that tomorrow will feel more normal than today...
write back


lots of love the sibonyz

First impressions are that it is a beautiful city. 

There is so much history here. Yuval and I are very interested in going to the Shull and meeting some of the Graz Jews.

The guest house we are staying in is old, huge and so very cluttered. We keep finding collections of a families history, hidden rooms in the basement and attics and wondering if this is where they may have possibly hidden Jews during the war. Probably not.

The guest house is an old farm house. Our room is a self contained apartment with two bed rooms, a bathroom, reasonable sized kitchen and a meals area. There is plenty of room for the 4 of us.

A little old lady lives here, as far as I understand this was her farm and she lives here as the caretaker, there is a main hotel up the road a bit and can be walked to by following a path for about 5 minutes through the forest at the back of the property. The ladies name is Greta and she only speaks German. She lives in the front part of the house which is across the hall from our room.
The house is absolutely filled with various odds and ends. Every wall has at least one painting (most have 3 or 4), old Renaissance style, sketches, crusifixes and tapestries. There is an old iron collection, horse shoes, old pots and pans (some cake dishes made of ceramic), lamps, wine and ornaments from around the world all displayed on cloth covered tables all over the massive 3 story house. Our room alone has about 15 lamps and lights (they mostly match).

Outside there is an old barn and run down farm house that seems to be a home for many pigeons. There are ducks, peacocks, deer (one with big antlers), llamas, goats, donkeys, and a cat. Yuval and Nissim have been feeding them a few times. Gretta told me that the black Lama's name is Felix. She seems to love her animals allot which is nice.

There was an Australian family staying in our room before us. They were also here for tube weaning and were successful. Apparently they have been on the news in Australia - 'Ruby Taylor' from Coffs Harbour (yep Kellie, that is the one you mentioned to us the other day). The family raised over $68k for Ruby!! Well done!!! We didn't meet them as they left a few days before we arrived, but we met a New Zealand family who were also here weaning their daughter off the tube (also successful). Again another fund raising family and very inspiring.
The NZ family showed us the walk to the hospital and where we have to go for therapy. They also told us bus and tram numbers, but most importantly where to get the internet!!! They left today (2nd Jan 2010).
Yuval and I had actually watched a NZ 20/20 news story on the net a few months ago about this family, so it was really interesting to meet them in person.