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Yuval's blog

YUVAL'S BLOG::::

Home for 2 weeks

12-02-2010

Home for 2 weeks


Hi..
It has been 2 weeks since we returned home from the weaning program in Graz. It is the best thing that we could have done for Tova and her development.
Apart from the readjusting to Melbourne and the stinking hot days and nights and recovering from jet lag things are fantastic. Everyone slept for so long.
Tova eats alot of food and sometimes she eats 200 mils in a sitting which is a huge amount. Her average is 150 mils. When we ask Tova if she wants food or a drink her face lights up and she makes excited sounds like she would if she wanted to indicate excitement for a bath or favourite toy. Its very cute and she is a pleasure to feed.
Her taste has developed too and now Tova likes almost anything, like vegetables and meat and avocados. We are fortifying her meals with vitamins and minerals,calorie rich supplements, cream, bran and yogurt - ( not all at once). She still loves chocolate pudding but does not get it too often
She is much better at drinking now and can easily have 60 mils of drink anytime in between meals. At the start she found it difficult to swallow without chocking or coughing.Tova has changed since being introduced to food. She is soooo happy, she has also become more demanding and definite about what she want which is a positive change from her passive nature beforehand. She has a new sound that she makes as well.
At the moment most of Tova's food is taken via syringe with Tova lying down with her head on a pillow and must be administered while singing songs and doing hand movements. If she does not like the song or your hands are not moving than she will stop eating.. Its like a game Tova is playing - if you do the right things she will eat and eat and eat. It makes it difficult for other people to feed her but we will see how we can change things around.
Tova is very interested in eating while in a high chair with a spoon but again is particular about what has to be happening before she will accept food in her mouth. She can eat 60 mils or more like this and then she will have more by syringe.
Meanwhile Shoshana and I are very good at keeping Tova interested and finding new and exciting song variations. When Nissim started eating he would eat and eat and eat huge volumes and would cry if we didn't get the next spoon in quick enough, but after a few months he started to become more fussy and started eating less. We expect that Tova might also eventually stop eating so much which is fine.
She is putting on weight and is very happy - so are we! Shoshana removed Tova's peg button after we had been back for a few days. It looked gross but came out pretty easily and Tova cried  for 20 seconds. The site leaked a tiny bit for a few days and is healing very well after a week and has stopped leaking all together.


 

Friday – yuvi

29-01-2010

This morning Nissim and i went for breakfast in the usual place alone.


The waitress remembered my entire order from the day before so the service was really fast. No slipping this time either.
2 therapies this morning and then the play picnic. Tova weight is stable.
Nissim has many friends in the play picnic who delight in giving him heaps of chocolate and biscuits. He was an absolute mess today, and was pretty hypo for the rest of the evening too.
Tova is eating very well and eating a few carrot based pureed stuff and also some risotto baby food but she still prefers sweet food.
Shosh has been packing and the kids went to sleep without much fuss quite early.
Tomorrow we have play picnic and a meeting with the head professor of this group and say good bye.
Its hard to believe we have planned this trip, come over and done the hard yards and succeeded, and now its all over and its time to go home.
It feels really good.


 

Thursday

29-01-2010

I cant believe how quickly the end of our trip has come.


2 more days and 1 more night. We did it.! Set out to accomplish something massive and succeeded.
Pushed prams through freezing snow filled streets and up great big hills.
Today was a really good day. Got woken up early and Nissim and I went through the forest to have breakfast..
The ground was pretty slippery and i was thinking i should be careful and woops.. i slipped holding Nissim. I slipped side on like on my hip and made a loud yelp ( not a cry ) and Nissim got scared and cried for a little bit - he's such a baby. I thought i may have crushed his little leg but he was just scared of my reaction.
Breakfast was good with just the boys. We ate bread and cheese and soft boiled eggs and OJ and grapes and strawberries.
Shosh fed Tova in the meantime at home and enjoyed the quiet I'm sure. I brought her some cake and bread rolls.
We only had one therapy today, occupation therapy, and Tova and Nissim had great fun. Tova was swinging around and playing games well that require hand eye coordination.
Its nice having therapy everyday. Tova looks forward to it and gets excited when we get close to the rooms.
Tova had a great day of eating. Perhaps she even outdid herself again.
She has lost a fraction of weight but it really does not matter. She is comfortable and happy to eat.
At the play picnic i fed her. I tried spoonfuls of mashed potato and gravy which she was having fun eating but soon got sick of, its hard for Tova to eat sitting up with no high chair. Then heaps of fruit puree and also vanilla pudding.
She was letting me make a constant stream of puree come out of the syringe while she swallowed. This way she can eat alot in a short time.
Before her bath i fed her a small tub of chocolate pudding, 100mls, which she ate with a spoon.
Before bed tonight Tova ate the largest volume she has ever eaten. Maybe double what she normally does or more.
We are so happy and confident that Tova will eat and drink orally. She will have to get stronger and eat with a spoon and then with her hands and eat foods that are not all pureed.
All this will happen in time.
Tova time.


 

More

28-01-2010

Hello again..


We are just wrapping things up in Austria so there is really not much more to say. Tova is not receiving anything from her peg site. She would benefit from some water in there but we are not giving her any. She has to learn to drink it and she has to be thirsty in order to want to drink it.
All the exciting and stressful stuff has already happened and now we are just holding steady. Originally we had planned to leave on Thursday and we really could have but we were not sure that Tova would bounce back so quickly.
Hopefully we will be able to get a few meals into Tova by spoon instead of syringe and then slowly but surely wean her off the syringe. The main thing is that she is eating with her mouth and that her throat and stomach are experiencing new textures and sensations instead of peadiasure vanilla peg formula for every meal.
Still feeling guilty that it seems we are always trying to hold Tova down and put food in her mouth. At least she gets songs during her meal times.
It snowed heavily all day which feels nice because we are heading someplace very hot soon.
What a temperature difference - tomorrows top temperature will be 1 degree and the over night low is -8 degrees.
We will be the pasty and pale, fat family.. look out for us.Could not sleep for many hours last night. I lay and thought about all the little things i have to do in Melbourne. Unpaid builders and work and phone calls to make and things that i have to chase up or change.. I had buried all those thoughts for almost a month. My huge pillow didn't help much either, its 3 pillows worth in 1...
Looking forward to getting back home and seeing the new renovations and getting back into a routine, eating vegies and fruit from our garden and watching Tova develop.
After all this is the year of Tova!!
Tova is still eating large regular volumes and is still getting annoyed at us for not being able to understand exactly what she is trying to communicate with us.
I hope she is happier at home where she has more things she loves to do.
Wednesday morning was freezing cold.. not snowing but much colder than when it was snowing.. Alot of the running stream on the way to the hospital had a top frozen layer.. It looks amazing. The sun was out all day and melted patches of snow that have been there for weeks.
I have never seen the snow before and now i can say i have lived in it for a month. What a great experience this has been.
Tova and Nissim had lots of fun at the therapies they had today. Tova is much livelier and responsive and a pleasure to watch.
Play picnic is quiet, many of the families have already left and the main people who run the clinic have the whole week off too.
We meet with the chief professor on Saturday at 12 before we leave Austria.
Tova is really into Shoshana tonight.. Shosh has better food songs with more movements and i am old news. I am so yesterday.
Hope to hear from some of you before we leave even though all the exciting news is over - its very boring when there are no emails or comments to read.
Its been a long month with no real TV or old friends around or places to escape like the gym or work or family dropping in.
I not sure how Shoshana puts up with my constant babbling but i know she will be especially happy once we are home and we have some space from each other and she can finally get some peace and quiet.


 

Day 22

26-01-2010

Monday..



Everyone woke up happy and slept in until 8.30.. It seems to be getting later every morning.
It was gently snowing again.
Had breakfast and went to 1030 appointment.. that's more like it. No rushing around like mad chickens. We have a very limited schedule this week. 1 or 2 therapies a day, plus the play picnic.
Tova was happy at her sensory therapy and Nissim had a chance to run around exploring and being cute..
Then we went to physio where Tova played and explored new toys. She is concentrating on eating now and not really on crawling or bigger movements.
She is eating lots of syringe food too, not the greatest variety but her volume intake has increased..
We bought lots of fruity puree baby food and different vanilla pudding and fruity yogurt.
She has put on a fair amount of weight over the weekend, about 150 grams, and we hope to fatten her up before we leave.
Tova is very happy to eat as long as you read her signs and know when to have a little break and burp her or when to change songs, also if you are Shoshana you have to know when not to walk past Tova and let her see you.. Tova stops eating and cries "save me"..
Play picnic was good.. 4 kids needing therapy and Nissim who shows them all hows its done.
Nissim was a grub.. eating all sorts of junk..he had the whole room looking at him and laughing with him by the end of the session..he was interacting with lots of people. He is quite independant too, spending most of the session away from us all together.
Shoshana and I tried to give Tova mash and gravy - not interested.. but she ate pudding!
She eats every 2 or 3 hrs and we now use this massive 60 ml syringe which she usually finishes and sometimes has another one.
This evening i sat her in her high chair at her request and spoon fed her 100 mils of vanilla pudding..We were amazed.
We played a few games but the game which she loved the most, and opened her mouth wide and smiled for, was the classic aeroplane game.. starts here - then there.. vroom in her mouth.. she ate more than half the tub playing that game.. Pay attention Saftas and Sabas because you will need to learn and develop these skills when we return.
It felt great to feed her so much by spoon.
What was interesting was that Tova was able to swallow while sitting up which we were not sure that she could do with her low muscle tone.
Shosh has been emailing the professor of the clinic who is not working on site this week until sat. The professor is up to date with Tova's progress and wanted to know if we would like to remove the peg this Thursday.
I think we will not remove it and fly back to Melbourne with the peg intact for peace of mind. Its a long flight after all.
Its very easy to remove once we are confident she can live without it.. and it can be removed in 2 minutes.
So we have only a few days left and we are feeling great about the program and therapy progress, especially after the extreme low we had all of last week..
When Tova is down we are down..


 

Weekend

25-01-2010

Saturday and Sunday...



This weekend was pretty uneventful. The New Zealand family left very early in the morning. Too early for me to catch them, and say goodbye again. It is much emptier in this guest house now.Before they left we were given a huge box of left over food and drinks from their stay. Lots of chocolate and biscuits and coke and other stuff, its hard not to eat it all at once. Their Graz portion of the journey is over.
Congratulations. Ours is drawing to an end.
We had a lazy start to day, the kids slept in again, we could get used to this sort of life. Back home its between 630 and 715 am everyday.
Tova was in a good mood and accepted Shoshana syringing food as long as songs were sung or games were played.
Around midday we went to Mur Park shopping centre by bus, tram and another tram..It was a very nice ride with not long to wait for connecting transports. We saw different parts of the town that we had never seen. We also travelled past fanatic handball fans wearing crazy team outfits and drinking and shouting and cheering. They are just as gay here as back home.
At Mur Park we looked around but didn't buy much. It was a medium sized shopping centre but we have been spoilt with Chadstone shopping centre. Mur Park would be like Chadstones left arm. We sat at a cafe and drank coffee and saw lots of people ordering huge over sized glasses of coffee with cream and topping and straws. Next time I'm getting one of them.
The kids were mainly unhappy for most of the time. Tova didn't really like the roofing of the complex and was the saddest.
She didn't eat much in the day time but still ate something regularly. We went to some buffet style restaurant and the kids sat in high chairs and had lots of fun. At this restaurant you grab a plate and fill it with whatever salad you want and at the cashiers desk they weigh the plate to determine the cost.
Tova was watching Nissim and Nissim was eating heaps and trying to feed Tova. He also offered her his finger in her mouth and drink bottle. He is very gentle and accurate.. Very cute.
After a few hours me and the kids were over it - long trip and a long time for kids to be in the pram..
We public transported 2 thirds of the way and walked for 20 minutes to get back home.. Nice to breathe fresh air and work hard..
Getting back to the gym in Melbourne is going to be a killer.
Nissim fell asleep before we got home but woke up an hour later very upset. After dinner and a bath he was set for bed.
Tova ate heaps of food, had a bath and then ate heaps of food again. She fell asleep quickly being stuffed with food.
Tova diet consists of chocolate pudding, pureed fruits, olive oil, milk brie powder and yogurt, she doesn't like any potato or spinach type baby foods. We will try some carrot puree tomorrow.
She is not drinking much so we are still giving her water a few times a day through her peg site.Nothing else goes into her peg.
On Sunday everything is closed so its a very lazy day. we went and had breakfast at the main house. Nothing special. I think next time I'm going to order everything i can imagine and make a bigger pig of myself.. Its boring ordering soft boiled eggs all the time.
Tova ate her proper amounts throughout the day and slept for about 3 hours in the afternoon.
I feel bad for Tova because so much of her awake time is spent by us piping food into her mouth. That's what we are here for though. This week she has 2 therapies everyday as well as play picnic so hopefully they will drum some life into her..
6 more days until we leave.


 

Friday

23-01-2010

Friday...



Today marks the end of the third week and the end of the therapy clinic for most of our group. Congratulations to those families that have new hope and return home with a changed child.
Both kids slept through night. Tova just took a long time to get to sleep. Shoshana and i went outside late last night and took heaps of photos because it was snowing.
Tova woke up happier but she slept in quite late and we left home for the hospital without feeding her. She looks and acts better.
There was a thick layer of fresh, fluffy snow outside and it was much colder than usual.. I grabbed a sleigh and shot passed Shosh and the kids down the long, steep driveway. Crashed, ran back up and did it again.. Good start to my morning. You have to be quick because the maintenance people come up every snowy day and clear the whole driveway with a tractor and lay down tiny stones for tracking. Once they do that you cant slide down anymore til there is a good snow down.
Tova ate some syringed food in the morning thanks to our therapist but mainly thanks to Shoshana. Tova has not been letting me feed her lately. She only accepts food from Shoshana.. I used to be the king of feeding Tova.... i will regain my status before too long.
We have 9 days to try and demonstrate to Tova that food is fun to eat before we leave Austria.. Tova is such a champion that i am sure she will make us proud..If not we may trade her in for a newer model when we get home.
Tova gets annoyed and frustrated often nowadays. She is learning new behaviours and manipulating us to do what she wants - like most normal little kids.
Her spots have almost disappeared and her throat is much better than yesterday..so its Tova time.
At the play picnic Tova was very happy and interested in watching Nissim eat. Nissim tipped over so many bowls of spinach and potato slush and soup and yogurt and ate heaps.. We have not been to a play picnic all week so it was a treat for the kids.
Tova ate a decent amount of syringed food and a few spoons of potato and gravy.. a good start.
The New Zealand couple and their son Ollie have succeeded and are leaving tomorrow. Their boy can now eat orally and sustain his weight. What a champion.
We did another food shop, which is the highlight of our days here,  and came home. Earlier in the week we said that we had too much food and that we would just eat what we had here and not buy anymore. That did not last 24 hours.
Shoshana continued to syringe feed Tova throughout the afternoon and evening. I even got a few feeds in, which makes me feel good.
Tova is on to chocolate pudding or fruit based purees.. That's what she likes so that's what she gets.
Later on after eating has become normal and pleasurable again we will start feeding her food that is healthy..
At 4pm Hayden, the New Zealand dad, and I went up, up and up to Mt Schlossberg and had a beer and celebrated the end of this fantastic journey. You can see all of Graz from this vantage point and it looked amazing when its gets dark ( 5.30pm ) and all the lights come on. Its such a beautiful city.
Shoshana stayed home and fed and bathed the kids. Tova ate a record amount and stayed up past 10 pm.
We have definitely got our Tova back. I am positive that tomorrow she will be more active and more jovial.
I hope we achieve our Austrian goals

Day 18

22-01-2010

Thursday..



Today is another one of those days... the kind we have been having lately..
Restless night for Tova and Shoshana, while Nissim and i slept like logs.
Tova is much the same as before.. not interested in eating or moving around at all.Very interested in being uncomfortable and crying.  Everyday and night we have been telling each other that we hope she wakes up tomorrow feeling better.. One of these days it will be true..
Not today.. we have a sad Tova and we are stressed too - naturally.
We headed to the hospital and missed our only therapy session of the day, it was a 9 am session and today there was no chance of making it... Plus with Tova all broken it seemed pointless. She has reluctantly been eating abit and we are back to peg feeding her formula to give her enough strength and fluid to fight what ever it is that is knocking her around so much.
While waiting to talk to a doctor Shosh showed me Tova's neck which was much redder and spottier than yesterday, it looked terrible and alarming.
I went up and interrupted a meeting with all the therapy people and they sent down a new doctor who checked Tova over.
She has many more darker spots, some of which have joined together forming patches,  covering her little body and a sore red throat. We were sent for more blood tests for Tova - she does not cry anymore when the prick her or draw blood which is a good thing. The doctor seems very smart and thorough..
While waiting around, chasing Nissim and stressing we were told that we would be admitted as in patients to the hospital for one night of observations, one parent would stay with Tova - they really cant say what is likely to be wrong. I asked what they would be serving me for dinner and breakfast.
They say Tova might have a virus and that the red spots are a normal symptom of a virus and not a reaction to a food allergy. They say that an adults immune system would be able to destroy the virus before it got to this stage.
Most people in the hospital are very unconcerned with Tova's symptoms or the fact she has been floppy for almost a week now. We don't know what to think.. In the past we have learnt that if you wait too long and are too easy going that things can escalate unnecessarily.
Her blood tests came back and we were told that her blood is better today than her test yesterday revealed and they do not recommend a course of anti biotics yet in case it gives her diarrhoea which will make her loose more weight..
As far as something to sooth her sore throats or spotty body - they had nothing to offer or suggest.
An hour later after talking to the head professor we all concluded that Tova will not benefit any more from staying in the hospital than she would being at home with us..
So its back to the guest house we go.
One good thing is that Tova's breathing sounds and appears to be fine..
After lunchtime Tova seemed to brighten up a bit.. It all started with a few special smiles..She is also more active and can hold her concentration for longer..Maybe the peg feeds are kicking in.
This is the first time for so long Tova is showing some real signs of improvement..
She is still covered in a rash but her temperament is getting better.
So glad we did not stay in that hospital tonight it would have been cold, lonely and depressing..
Tova still actively rejects food and drink orally and even all the old songs which used to distract her while the syringes pumped food into her mouth don't work anymore..
I think Tova wants new songs with more pizazz, more up beat.
Suddenly eating orally seems much less important than a healthy, happy Tova.
She will get more peg feeds and fluids tonight and we will see what tomorrow brings.. I am not going to write it...........



 

Day 17

21-01-2010

Wednesday


Last night i thought that when we go into the hospital today they would do some tests on Tova and tell us she has been aspirating and has an infection on her lungs...She might be hospitalised and we may be stuck here for some time.
Things were not great this morning, we are desperate to have our angel back. Tova woke up after 830 which is very late and unusual. Nissim was happy to amuse himself in his cot until 830. They were both up many times during the night. Nissim is teething and Tova is sad.
Tova seemed a little happier at first but still would not eat  or drink, she gave away a few weak smiles which were nice to see though..
Same story - floppy and tired - its getting a bit scarier now, when will she snap out of it???
An hour later Shoshana noticed that Tova was totally covered all over her body and face with lots of tiny pink spots. Shosh and I were stressing out a little more now.
We quickly got ready and headed down to the hospital to have Tova looked at... expecting the worst - like chicken pox or who knows some type of Austrian super bug.
Shosh is feeling better but not 100%. Neurofen helped - thanks Raewyn.
The chief professor of our therapy group looked at Tova straight away and said the spots were a reaction to food or washing powder and not to worry about them at all...pheeww. .....NEXT
She ordered blood tests again for Tova which came back as normal so there is no infection in her blood and we were instructed to feed Tova some peg formula to give her strength back. Maybe the tests came back normal because of the magic water Tova has been getting over the last few days.
Tova ate a small amount at her physio therapy which was a relief. The physio said when we are sick we eat less and want to sleep more and since Tova cant communicate so much she cries alot.. Its all seems logical - but why has it lasted so damn long????
It is apparent that she also has a sore throat which has been making it hard for her to swallow.
This afternoon and evening Shoshana has devoted a lot of time to offering Tova food, which Tova has been eating. Much less than before but its a good start.
Back to the food Tova first showed a liking to - chocolate pudding.
She will get more peg formula tonight while she sleeps and some magic water and more laxatives and panadol.
The New Zealand couple from upstairs are set to fly home on Saturday morning with a success story on their hand - Great news - Congratulations to Ollie.
Since Tova has been under the weather lately we have missed the last 3 play picnics so we have not seen how the others in the group are going and progressing.
I hope we are able to join everyone tomorrow again.
I really hope Tova wakes up tomorrow and feels better. Its almost been a week and we have had enough.
We should have been leaving at the end of this week too and we are just wrapping our heads around being here for just a bit longer.
The sun is starting to make more appearances the last few days which is very nice to feel and see. The left over snow is melting quickly and trees are returning to green instead of white.
Its 730 pm here and everything is quiet - all kids sleep peacefully - for now.. Oh i wrote too soon, Tova just burst into tears and Shosh is consoling her.
Today CNN is back on TV, it just decided to stop working about 2 weeks ago, yay some English speaking programs for background noise.

Day 16

19-01-2010

This morning Shoshana is feeling like i felt on Saturday.. tender stomach, headache, aching bones and muscles no appetite. It is possible that Tova feels like this too but she has been feeling it for days..
It must be horrible to feel like that and have people pick you up and force food down your throat and put you on the floor with toys around you - while all you want to do is sleep. Poor Tova.
I took care of the kids this morning while Shosh stayed in bed, i know how she feels. When i was sick i stayed in bed for 13 hours while Shosh did everything so i can't complain.
Tova ate and drank orally in the morning which made me feel really good. She then fell asleep straight away and then i dressed and fed Nissim.
The NZ Nana Betty offered to look after NIssim for a couple of hours or so late morning which was great..When she brought him back he didn't want to let her go. He must really miss his Saftas.
We have decided to miss all therapy today and let Tova sleep and recover. Hope its the right choice.
I tried to feed Tova twice since breakfast which was very unsuccessful and made Tova cry heaps. Sleeping is Tova's new pass time.
She was still very tired and i was confused and beginning to stress.
I don't want to create bad and negative experiences with Tova and oral feeding and undo all the good work which has been done..
I am feeling stressed and unsure of what is going to happen with Tova, she has been floppy for 5 days already and seems to be getting worse .
We were hoping to leave at the end of this week with a brand new eating girl.
I think we are going to have to stay an extra week to ensure everyone is comfortable before returning home..
Tova refused more feeds before bed and had another uncomfortable night. Shoshana recommended putting some peg milk in Tova's peg but she was sleeping on her stomach so we could not.
Tova has surely lost weight over the last few days.
Send us strength..

Day 15

18-01-2010

Finally and to our surprise the bubble of good fortune has burst.



Monday..

Tova is still floppy and very very tired. We went to her physio and she confirmed what we already suspected - Tova is constipated and  possibly a little depressed.
We went and saw the main Professor and were issued hardcore laxatives which worked in a matter of minutes.
Soon after Tova ate a little more and then fell asleep for an hour.
Before the play picnic she was weighed and has not dropped much at all which is a surprise because she has missed a few feeds and had reduced feeds at other times. She felt hot and doctors discovered she was running a temperature too. She has been hotter than normal for a few days.
We packed up and went back to our guest house with instructions to flush Tova with lots of glucose water through her peg and give her another hardcore laxative later in the evening.. She hasn't had much to do with her peg for a week so it seems like a little step back but she needs lots of water running through her.
Tova craves and gets excited about food when she is genuinely hungry.
She has a sort of cough and she is hot.
With all the glucose water and stomach pains Tova is not really interested in eating anything orally which is fine, she has been so good throughout the whole time here that one day while she is recovering should not make any difference.
She had the next lot of laxatives which worked very well again.. With all of this backed up rubbish out of Tova's guts we are very hopeful that tomorrow she will feel so much better.
I tried to feed Tova a few times - she turns away and really cries - not fake cries.
Tova had an uncomfortable time in the evening but finally went to sleep ( again ) and slept through the whole night.
I really hope that Tova will spring back to her usual Tova self. Magic sleep time.


 

Day 14

18-01-2010

Sunday...



Tova slept in our bed all last night.. Not happy at all, she twisted and turned mostly. One time she woke up very thirsty and we put 50mls of water in her peg just to ensure that she gets hydrated, its a bit of a worry. At least Nissim didnt wake up during the night.
Tova is still tired and floppy today with a diminished appetite and pretty sad. She has a cough too or maybe its just raspy breathing.
It is snowing steadily today and all the shops are closed around here so we are stuck inside..
Shoshana might have cabin fever. I am just happy that i feel better.
Tova had some laxative this morning so hopefully things will clear for her. She seemed to be in a better mood around midday. Poor princess, its seems her whole life at the moment is syringes in the mouth of food and drink with short bouts of time to catch her breath..
Finally the laxatives have worked and we could see why Tova was so uncomfortable. She is still no where near her usual happy self and hopefully tomorrow will be a better day. Can't really blame her though because we have just been inside the whole day with the same old boring toys and the same old boring Imas and Abas and Nissims.
Nissim also filled his nappy with a record volume while he was sleeping and the whole house was filled with his stench. He has got quite a little gut at the moment which looks even bigger because of his outie belly button.
Tova had her first little vomit it was only small and is nothing to worry about.
She had mashed potatoes and olive oil ( thanks to a tip from a budding chef we all know and love )and a tomato sauce for an early dinner and ate quite alot.. Maybe if her food is more calorie dense then she does not have to eat such a large volume.
Nissim and Tova had a bath together which looked like fun. Tova got out and was dressed and played on the floor for 10 minutes and then fell asleep on the floor.
She has been tired all day. Hopefully these extra sleeps are what she needs to regain her strength..
When Tova is happy we are happy.


 

Day 13

16-01-2010

Saturday..


Tova is very floppy and unenergetic this morning. I feel like crap too. Queasy and  lingering headache hoping it will go away.
We all went for breakfast through the snowy woods and over the hill where we were served under cooked soft boiled eggs and cake and coffee. Despite my tender tummy i managed to eat 5 of these eggs which i would be regretting in a few hours. Shoshana ordered poached eggs which never turned up at all. We were told at the end of breakfast that they did not know how to make them ( even though they had served them the week before to the NZ couple )
We met up with the NZ couple and their son Ollie and their Nan after 10 minutes of confusion and half orders being brought to them they got hold of the manager who brought them Austrian variations of the foods they ordered.. Looked tasty. Tova ate a few mouthfuls at breakfast number two.
On the walk back to our guest house Tova fell asleep on my shoulder, I must have the most comfortable shoulder this side of Graz - ask Nissim, but we still had a play picnic to go to..
I was feeling terrible now.. more queasy and my body was aching but the fresh air and walk to the bus stop felt good..
Tova was still very floppy and and tired and was not her usual self.. She looked pale and over it.. I knew exactly how she felt.
I fed her a few syringes and she told me when she had had enough. She ate less than normal but she is feeling sick so I figure that is normal.
I was feeling so bad that Shoshana took control and did everything from that point on while i lay on the floor.
We stayed around for an extra hour after the play picnic was over so Tova could have a blood test to see whether she was allright..
The blood test came back very positive so we left with reassurance that things were not too bad. I think that Tova is constipated.
Tova went to bed as soon as we got back home. She is uncomfortable and sad and is crying alot.
Despite her unhappy state she is still quite happy to have food orally..
I also went to bed as soon as we got home and did not eat anything. I slept from Saturday afternoon right until 7 am On Sunday and woke up feeling heaps better.
I am glad that i did not get sick and that it was just a small bout of food poisoning..


 

Day 12

15-01-2010

Friday..


Tova and Nissim slept through the night.. Its great knowing that they are comfortable. Tova ate with the same amount of interest and enthusiasm and ate heaps.
When she was weighed  before the play picnic we saw she had lost a tiny fraction of her weight.
She now accepts food via syringe without any hesitation, she is calm.
I think she will be having her peg removed next week..
Shoshana and I are really happy that Tova is eating orally and can't believe how easily she has adapted to this new process. We are so grateful to be having this experience..
We are a little bit over being far away from home.. Not long to go.
There is an additional play picnic tomorrow and we have been asked specifically to go so we can see Margarette and talk about Tova.
Tova breathe now smells sweet from the foods she eats.. Its a nice change.


 

Day 11

15-01-2010

Thursday



Kids slept in this morning and woke up happy.. We don't have to be at therapy until 12 for the play picnic and that's all we have to do today.
It is a relief that Tova is taking these new skills on board and is happy and willing to eat so much orally. It really makes this experience enjoyable and less stressful.
We are more than half way through the therapy.
I gave Tova the same volume of food that Nissim would eat for breakfast and she swallowed it all. I gave her syringes because i wanted to ensure she gets a big meal at the start of the day.. Again the mixture was thicker than puree. Tova stomach must be stretching. Her complexion is better too, she has more color in her face.
We went for breakfast - up the hill and through the snowy forest, and made a real mess and ordered heaps of food.
Eggs for the oldies and Nissim, we ordered 7 softboiled eggs and got some strange looks, and yogurt for Tova. She didn't like the taste of egg yolk.
Tova is become more vocal and much louder. Its funny.
Nissim is waking everywhere and seems to going through a clumsy spell.. He has fallen over too many times and Shosh and I have decided that enough is enough and he will not be allowed to walk anymore.
On the way back from the breakfast buffet Nissim fell asleep on me and was put to bed as soon as we got home.
Shoshana and Tova went to today's therapy together while i stayed home and waited for Nissim to wake up.
He slept for about 3 hours and it had been the first time for more than 2 weeks that i have been alone in a quiet space.
HEAVEN.
Shoshana is a champion and had to push a very wide double pram up hills and along narrow footpaths covered in snow and deal with today's events without me..
Tova lost 10 or 15 grams.. no biggie.
Margarette the chief founder of this program told us yesterday that the protocol for removing the peg button is:
one week of weight gain, happy child and confident parents.
How exciting


 

Day 10

13-01-2010

Wednesday...



Today we had early appointments and were not well rested.
When we got there our first appointment therapist was a little sick so we decided not to see her, would have been nice to have known earlier and then we could have taken our time a bit..Its nice to run into other people from our group and talk about the therapy. Tova gained 10 grams since yesterday which is nothing really but at least she has not dropped weight. She looks pretty skinny. (I'll fix that)
Shoshana and Tova ate heaps of mashed potatoes in gravy at the play picnic with a spoon and no syringed food at all..Good effort since the mash potatoes are much thicker than the puree food she has been swallowing.
She had a good play around on the floor and was happy. We  came straight home after the play picnic and the kids stayed asleep in their pram for a long time..It will be nice for them to wake up and all ready be at home..
In the evening Tova ate a whole bowl of baby porridge with Cinnamon and squashed banana with a spoon.. This was the first real meal i have prepared and successfully fed Tova - - and it felt great..
Having a regular eating baby...
She was having fun in the highchair and asking for more food.
Tova cried alot before she went to sleep and woke up crying twice again during the night.. the second time she was very upset and was wheezing and needed ventolin.. The ventolin actually worked instantly for the first time ever.
Tova kicked me out of my side of the bed and slept soundly next to Shosh. She woke up at 8 am

Day 9

12-01-2010

Tuesday


Nothing much has changed since yesterday. Tova is eating heaps via syringe. Getting angry and frustrated when we don't play games her way. She is changing and we haven't really worked out want she is trying to communicate yet, but it is a positive change. Before too long we will understand princess Tova more.
She ate well in the play picnic. By the end of our session she was absolutely stuffed and just lay on the floor motionless for 10 minutes with a face full of  food.
We did not play any highchair spoon in the mouth games yesterday but definitely will tomorrow. Its important for her to get used to spoon feeding and she will. It would be amazing if she learnt how to drink from a bottle but Aussie therapists have told us it is unlikely. It would make life easier for us because we could get more liquid into her and send her to bed with a warm bottle.
She had trouble sleeping and woke up crying twice during the night for more food and was restless for a long time.

Day 8

12-01-2010

Monday:

Today was a fantastic day.
A full morning of therapy and we saw that Tova had alot of energy and focus. When she is happy we are happy. Nissim slipped and slid his way around, falling of benches and crashing into mirrors here and there..people look on with shocked expressions when he stumbles and narrowly misses smashing his head on a corner of a wall or something... He is actually very coordinated and saves himself from the big accidents.. He will come home a fully walking little man. He has started saying a few more words too.
We are feeding Tova every 2 hours without a hitch...
My focus is on increasing the amount of food that goes into Tova's mouth every feed and sometimes i feel guilty because i push her until she is frustrated..
But every 2 hours she is eating more volume than before...
We weighed her before the play picnic and were delighted to find that Tova weighed the same amount on Friday as she Today..We would have expected a decrease because all that she has only had the smallest amount of peg feeding at night time..
The play picnic was good... Shosh began by letting Tova choose what to eat, so nuttella and custard  ended up all over her lips and chin..
We showed off our new skills in front of the whole room.. Singing songs in Hebrew and making up words that sound similar to what they should be because those are the ones that Tova likes ( Thanks to Saba ).
Our favourite and most caring and effective therapist is impressed by Tova's progress and showed us a way to feed Tova by with only one person.. very handy because Shosh and I have been working together to feed her over the weekend which leaves Nissim to fend for himself.. Yesterday he and Tova were playing together and he was extending his finger and putting it in Tova mouth which makes Tova cry.. He is copying what Shosh and I do.
Then she had a long play with food and plates and spoons and Nissim.
After shopping for more food we came home and continued the good work..We are making sure that Tova always sees us eating food and we are practicing when she is asleep...
I have fed Tova twice by myself and have really got so much food into her mouth. Now she opens her mouth and lets me know when to syringe the good food puree in. She is not frustrated and i read her signals and pause to hug her at times and stop before she has totally had it.
I hope she does not explode at our next feed..
I believe she is really happy to be eating orally and look forward to the next challenge that I'm sure is coming very soon.
As of today we stop giving Tova peg milk all together..
Tova has become more definite about what she wants and is looking more grown up..
This trip is amazing


 

Day 7

10-01-2010

It did not snow last night or this morning but there is heaps of snow outside. Its not that cold.
The kids woke up in a good mood.. Shosh gave Tova big drinks of pediasure through a sippy cup.
We set Tova up on her pillow and started syringing after she had had some time to wake up and prepare.. Now i can syringe quite quickly and Tova is quite calm and happy. She looks good with food on her face. She has normal energy levels today
Nissim had porridge, banana, apple. sultanas. He has been better lately and when Shosh and i are feeding Tova which takes 10 or 20 minutes he looks after himself.. He has learnt to walk and is always practicing. 10 steps - then fall and so on. But he is very coordinated and doesn't really hurt himself.. But there are close calls.
We went up the hill and through the snow covered forest for a 10 minute walk to the other part of this guest house where we had buffet breakfast. Very unfit because we have not moved all of Saturday and have eaten EVERYTHING in the house.
Both kids went in high chairs and Nissim had his tray set up with all sorts of finger food. I sat near Tova and fed her yogurt with jam but spoon.. She is getting used to the spoon and enjoying feeding time..
We sat there for an hour and walked back.. No one fell over this time.
Tova had more syringed food, 10 of them and soon after wanted to go into the high chair for more food games.. She ate a little there too.
Tova still gets a bit sad and cries when we are playing games and she does not get want she wants and is not moving around as much as i remember she did back home..
Its going to take a lot of time to get Tova to consume enough to make her sustain or gain weight.
She is doing very well and swallowing big mouth fulls and things are going well right now.
Kids are having their afternoon nap and now its time for me to enjoy some quiet time

Write back!

Love SIBOZ

Day 6

09-01-2010

Hi ya..


This weekend we have had no official therapy which has been great...No timetables or appointments or treks through the snow and up the crazy hill which leads to our comfortable home.
It feels so nice at this guest house. We have rearranged furniture and swapped and acquired things along the way and it really feels like home..
Shosh wanted to take Nissim and visit a shopping centre but decide to stay at our guest house instead. It was snowing quite heavily on Saturday which is beautiful to watch from a warm room but not so easy to travel by foot with a pram. I wanted to stay in the guest house with Tova and feed her calmly and persistently. The pressure from feeding Tova every two hours was taking its toll and Shosh and i were a bit irritable in the morning.. Or maybe it was just me..
We have a new method to feed Tova.. Shosh holds Tova's head still and sings while Tova lies on a pillow and sings while i have a small syringe ( 3ml ) full of puree and squirt it in her mouth whenever i think she has swallowed her last bit..
The first few feeds Tova was not impressed at all.. She would become sad and cry every time the syringe and any food went into her mouth.. She would be sad for a few seconds and then process what was happening and swallow..
We started with 2 syringes, tiny squirts at a time and then Tova said she had had enough..
By the afternoon we had a great system going and were getting in 7 syringes with big squirts - Tova still not overly impressed but having fun interacting with Shosh. Shosh is brilliant..
Tova has not gagged or vomited at all since we have been here.. Quite amazing..
Sometime she asks ,in her own way, to be put into the high chair and i play with her and aeroplane spoonfuls of puree or yogurt into her mouth.
She wanted to be in her high chair last night in between feeds for more. Its great.. I have to let her want the spoon to be put in her mouth instead of just putting it there.. So its one spoon for me and then i ask her if she wants some.. I can tell when she does - arms go up, eye brows raise and a little grunt of excitement.
The kids go to bed at around 6 pm and then its cups of fluffy fresh snow and Baileys for us.


 

Day 5

09-01-2010

It has been snowing during the night and for the first time since we have arrived it is snowing during the day. In fact it snowed and snowed all day. The roads are slushy and everything is white and fluffy. I have been awake in bed since 6 am.
Extremely worried about Tova. Waiting for her to wake up, imagining that she will be so hungry and thirsty and uncomfortable. When she woke up she was not keen on eating or drinking but in quite a good mood.. Happy enough for Shosh and I not to worry too much.. We know she is starving but that's part of the program..
We have therapy at the hospital from 9 til 10,... 10 til 11,... 11 til 11.30 and then the play picnic from 12 til 1..
a full day to take the pressure off us feeding Tova..
When we arrived at the first session the therapist was very concerned that about Tova's appearance and food intake and grabbed some food and showed us a calm way Tova can be fed through squirting small amount of food through a syringe into her mouth..We are to give her 3 syringes ( tiny ) every two hours.
We were relieved Tova had eaten something and we had a new method of ensuring some food gets into her belly..
At the play picnic Tova was accepting the new way of food delivery but not moving around much at all..
Concerned doctors decided she must have some electrolyte water put straight into her peg to pep her up and she was much better almost immediately..
She ate enough and fell asleep in front of Shosh and I in the middle of the play picnic.
Tova is so gorgeous!!!!!!!
We were told to feed her some milk while she is asleep and give her more electrolyte water during the night and also if she is very low on energy tomorrow..We are not due back at the clinic til Monday..
Feels like we are cheating but it give us peace of mind for the weekend.. THANK GOD...
Today we came straight home after the hospital and concentrated on feeding Tova. All went well.. Two good feeds.
Tova is a bit fragile all in all and cries at small things...
So many things have changed for Tova in just five short days of therapy
I had thought this program was not going to be too hard but i cannot even imaging what happens in week two

Day 4

07-01-2010

Yesterday Tova had no feeds or water through her peg at all. During the night  she had her normal amount of milk through her peg.


Tova woke up sad and did not eat much, All the fancy tricks that were a hit yesterday did not get me anywhere. A few tiny spoons of puree and few tiny sips of water.. I had thought that she was a super eater and that all or troubles were not going to be so bad.. Two steps forward one step back.
I became stressed and worried and tried again an hour later with the same success - none.
Nissim is fantastic.. he is so warm and loving.. He makes me happy. He is getting jealous of the attention Tova is getting though, its a bit hard trying to focus on a delicate quiet Tova when you have a full on demanding Nissim close by..
I was still worried about Tova and not handling myself very well..quietly boiling up inside, We had one appointment in the morning which was cut short and a waste of time really and then 1 hour to kill until the play picnic. Stressed, no where to relax and a hungry Tova.
During the play picnic i hoped Tova would eat a few spoons like she had done the last two days and at least get something inside her stomach, but she did not accept anything i gave her. She turned her head away and put her hands up to push the spoon away and cover her mouth..
Shosh seemed much calmer and was feeding Nissim and had different ideas on how to make Tova eat.. Ideas which did not make any sense to my stressed little mind.
After a few more failed attempts i felt i was going to lose it and i got up to walk out the room. Margarette a leading professor of the study stopped me and asked how i was feeling and i sat next to her and almost cried. We spoke for a long time and she assured me Tova was doing well and needed time.. her own time.. to strengthen up and become comfortable with the new stimuli. Meanwhile i was able to sit back and watch Shosh and the kids..
Tova took and few spoonfuls and also spent alot of time on lying on her side licking a cup of chocolate custard..
We got a sippy cup too that Tova was comfortable having drops of water from.
Then we were told to cut out her final peg feed of milk that night which is a scary thought.. we were allowed to give her 200 mills of water with abit of sugar in it.
More stress and concern throughout the afternoon and evening - not much eating and minimal drinking.
Tova looked stunned to me. She was not moving much.
She had a rough time getting  settled in her bed and we ended up giving her some sugar water in her peg which made her happy and she went to sleep.
Nissim woke up twice during the night but Tova slept through til 7 am...


 

Day 3

07-01-2010

Today is a public holiday in Austria so all other therapy was cancelled today except for the play picnic.. . Last night it snowed and snowed, everything looks so beautiful and fresh. The kids woke up early this morning - like 530 or 6 am..
Tova is on no peg feeds for the morning and lunch so it was more sips of water and spoonfuls of chocolate custard and apple sauce for her.
She has to work and she fights a little but she does swallow some food. I worry that she is not getting enough food into her body but the doctors say that even just a little bit of food can give her enough energy to be happy and responsive.
A few hours later we had breakfast at a restaurant up the road with another kiwi family and their great grandmother who are staying in the same guest house, but we had to trek for 10 minutes through the woods full of snow - its very exciting ( ive never seen snow before )
I slipped and fell on the soft snow on my back.. I was holding Nissim in my arms, he didnt care.. he just laughed at me...
Tova was not interested in any more tasting.
Play picnic is at midday every weekday and  was successful again.. I fed Tova small spoonfuls of potatoe and gravy, and some soup but i think her favourite ( or maybe mine ) is chocolate pudding and vanilla custard - one spoon for Tova one spoon for Aba.
I show Tova and over emphasis how i eat and then offer it to her..
She ate many spoonfuls, then had a break, and then ate many spoonfuls. I am very proud.
More spoonfuls for dinner and more an hour later with water too, ive worked out a system which lets me get more food into Tova, until she figures it out...
Tova seems to understand what is happening to her and will respond to questions for...... more food? or more water?
She wants to please us and wants to eat and gets excited during feed time, just like she would after sitting up by herself or crawling toward a toy and finally reaching it.
Tova looks different too, more mature or more grown up or something..
She is gorgeous and amazing.

Day 2

06-01-2010

Hi everyone..
Things are going very well in Austria ..We have been here for 10 days and we are very comfortable - warm and our pantry and fridge are fullllll.
We had our second day of therapy.. Tova was only allowed to have food or water orally this morning, so she had a little of each. We went to the hospital with a hungry and thirsty Tova but her mood was still good which makes things much easier for Shosh and I..
The play picnic went really smoothly. Tova is very interested in food, you can see it in her eyes and body language.
Today Tova was focused just on me, watching me eat and being very responsive to spoonfuls of puree and custard and yoghurt being fed to her. Sometimes i feel like crying out of happiness. She wants to eat but never was taught how to. It cant be this simple.
She was swallowing food and having a good time...Tova is an amazing little lady. The specialisst are happy and positive about Tova's development..
After the play therapy we had a quick wash and change of clothes and went to the supermarket to spend some Euros ( i bought a spool of black cotton for AUD $5 )...
Tova had more custard ( small spoonfuls ) later in the evening but amazingly also allowed me pour water in her mouth slowly which she swallowed without gagging or choking. It is really important that she learns to drink.
I am confident we will be leaving Austria with an eating Tova.. I am sure that we have to jump many more tall hurdles as the therapy moves forward and intensifies..
Tova is ready and i am so glad we are here together.
Lots of love

First Day of Therapy

05-01-2010

First day of therapy. I had a massive headache. It was the first day that we woke up with a definate purpose. Instead of walking around town and exploring we meet the team of people and other parents and kids who would be going through the same ordeal. Everyone has different hurdles to overcome.. No kid is just like Tova.
It was much colder than the other days. I saw ice build up on the banks of the running water stream and cars frosted up and frozen grass and if you look closely at the road you can see patches of ice around the rocky edges. Even with gloves on my fingers were sore. Tommorow is meant to be just a little colder.
Tova was poked and prodded and measured and she handled it all very nicely. Everything seems promising.
THEN was her first play picnic.. A big room with sheets on the floor and heaps of different dishes of food.. like yoghurt, pudding, biscuits, spaghetti, cold soup with dumplings, chippy things, cakey stuff, chocolate and other stuff too.. Parents can sit on the side lines and observe or go into a room with a two way mirror and look. Shosh and i will stay in the room with Tova and eat our own lunch while she learns to eat.
All the kids even Nissim are put down and can do what ever they want to do ( even eat ). Tova tasted a bit of food and then rolled around and tipped stuff over and slushed her way around the floor. The kids had all sorts of foods mixed together all over their clothes and bodies.
Nissim ate everything and got very annoyed and cried when his whole hand accidently was immersed in a bowl of spinach dip.. Tova spend most of her time after the initial exploring mesmerised by Nissim's eating capabilities..
After the therapy was over Shosh and I were stressed and not happy..i still had a mad headache.
I was thinking of how uncomfortable this process would be for Tova and was a bit angry and depressed . We will be cutting her peg feeds and water right back so she has to eat orally...
After a few hours my thoughts changed.. I feel that Tova will respond well to the therapy, she is interested in food and drink but just does not know how it is supposed to work.
Shosh and i will make her happy during her distress.
Today we have play therapy for Tova and then the play picnic again.. She has had to miss her moring feed and water but tasted a tiny amount orally. She is fine so far..
The real work starts now..

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


[1]788074587925408

2nd January 2010
First Days of Jet Lag