Home for 2 weeks
Home for 2 weeks
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
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.
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.
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.
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..
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.
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...........
Finally and to our surprise the bubble of good fortune has burst.
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.
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.
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..
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.
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.
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.
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
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.
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...
First Day of Therapy
First Few Days
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...
lots of love the sibonyz