The Tovington Post

Things are lovely and boring at the moment.

Nissim's creche told me that he is a good eater at creche, which makes up for the not so good eating at home (at least 2 days a week). I don't worry about him too much as he is happy and growing (so his clothes tell me) and there is no way we could force him to eat.

It is almost haircut time for him. In a matter of weeks that long pony tail will be a thing of the past and I will hopefully leave the 'are they twin girls?', 'what's her name' and 'she is so pretty' comments in the past! The big 3 years old is next month! He is booked in at a fancy pants kids hairdresser on his birthday. We have been preparing him for the hair cut for months and he is pretty excited to have short hair like Aba (and the promise of cake). However, there is potential for him to freak out. We figured that a hairdresser with play stations, flat screens and toys was probably the best way to go for a first haircut.

Tova has been eating heaps as usual. She is trying to feed herself more and more with the spoon and is having fun putting her hands into the food and hands into her mouth. She also likes to put food on one finger and then put the finger in her mouth. Clever!

Also, she has started allowing Yuval to brush her teeth with a real toothbrush and tooth paste. There is a process to it and she insists on the distractions he provides like singing and airplane sounds, but at least she is brushing her teeth!

I weighed Tova today after her bath.

She missed lunch today (was playing too much at play group and wouldn't eat for them).

HOWEVER, even without lunch...

10.1kg

Eating is going well. Not much has changed, but yes, the DVD player is GONE! Singing happens from time to time, but if I put children's music or Reggae on the ipod, Tova eats without me having to sing!

Sometimes she asks me to sing and if I don't she turns her head away from the spoon. But if I persists and be strong, I can usually get her to finish her meal without singing (I just turn the reggae up).

I have also noticed that she is now telling me if she doesn't like a particular food. In the past she would just eat anything. Now, if she doesn't like it for what ever reason, she makes it quite clear that there is no way that I will get her to eat it.

Thankfully there isn't much that she won't eat.

Everything is still pureed or mashed.

She is growing (I can tell by her clothes) and her legs look nice and chunky now!

Nissim is learning lots of crazy things from being a social being at Creche, I can't complain, he really is a good boy and learning from others is a part of life.

I got some new studio lights for my photography and am loving playing with them. I am finding it hard being tired all the time as I can't play much with my photography until kids are sleeping, which means I stay up until about 1am.. yawn.. It is worth it, because I love it..

For the past week I have been feeding Tova sans DVD player!

It has been a little bit difficult, but not as bad as I thought it would be. Also, having children's music on in the background helps. It is nice to see her appreciate music. When a song she knows the actions to comes on she does her little dance moves, she is so cute. She especially loves doing the diamond from twinkle twinkle.

The carers at her play group on Thursdays haven't used the DVD player for eating for months, I think that is why it has been so easy for me. They are such a brilliant play group!

Nissim is being his cute self, he is much easier now that he is just that bit older. He is able to communicate his needs and wants, which makes life much nicer. However he does from time to time resort to crying and fussing, which of course, drives me insane. However, he really is such a good boy.

His creche say that he not only is ready for 5 days a week of kinder next year, he NEEDS it. Wow! I was worried that 5 days would be too much, but they have reassured me that it is actually the best thing for him! He is so impressive! What a little miracle.

So, hopefully this transition from eating only when distracted is a thing of the past and also the stepping stone to independent eating, possibly even eating things that aren't pureed! I really hope so, but I am very patient about it. Little steps and one at a time!

What ever happens, I am very proud and very impressed by my two little premi babies.

Well I really don't have much to say. Which of course is lovely.

Tova is eating loads and Nissim isn't. Nissim doesn't eat dinner often and if he does it is usually only because he has convinced us to give him porridge or cereal.  He is happy and seems to be growing (according to his clothes), so I don't worry too much.

Tova had her AFO's (ankle foot orthotics) checked out this week and the AFO guy assures me that Tova's feet have grown and that we will need new AFO's in a few months. So, Tova is also growing. As she should be, she eats so much.

Tova is trying to self feed more and more, which is something to look forward to. Her food is still all pureed but with a few more lumps. Slowly, slowly.

That's all. Nice and quiet around here at the moment.

Last Monday Nissim had day surgery.

Since we can remember Nizo has had a hernia belly button (pupik). It was time for it to go.

When we arrived at 6.50am I warned every nurse and doctor that Nissim was afraid of them, doctor 'tools', stickers and pretty much everything to do with the hospital environment. EVERYONE was respectful and careful with him. I was happily surprised.

Nissim did protest about a few things, such as having the sticker on his hand, he didn't mind having the cream on (to numb the area for a drip), but hates having anything sticky on his body or clothing, so he made a little bit of a fuss. The nurse was strong and quick to get it on.

The morning progressed slowly with doctors and nurses asking Nissim questions over about a 2 hour period, all done quietly and carefully. Then it was time to 'go in'. . The surgeons were lovely, they told Nissim that the room with the big lights was where the Wiggles film their shows and that they were in fact a bunch of blue wiggles. Nissim was curiously cautious. Nissim told everyone in the room that in actual fact the Blue Wiggle is 'Anthony'! They were all interested and lovely!

When the surgery was done (about 30mins or less later) I could hear him crying down the hall way to where I was waiting, I ran to him.

He was delirious, they gave him strong pain relief to calm him down. It made a difference.

One very wise nurse, whom must have been working there for a long time, offered Nissim an icy-pole! He was lethargically impressed. She went away to check what colours they had and returned to ask him which one he wanted, white, green or orange.. He replied "Orange". He then spent the next half an hour or so eating it in a daze. He was so cute.

Tova spent the morning with Savta Debbie reading and playing.

Yuval went to work.

Saba Coby visited Nissim and me in the hospital just before we were discharged at about mid day. Ten Minutes after Nissim and I got home Aba arrived. Nissim spent the rest of the day on his Thomas couch eating bagels and watching TV.
For the next couple of days he wouldn't bend properly to pick things up so we all helped him. I think he liked having everyone do everything for him.

It was an interesting experience having the strong baby as the patient.

Tonight, a week later, Yuval took the dressing off. Nissim freaked out as it hurt to rip the waterproof dressing off. Poor bubba. After wanting me to hold him for 30mins he went to bed and fell into a deep sleep. He has also been at creche today, making him very tired.

Tova has been eating well.

She had a ear ache on Thursday night that hurt her so much that even panadol didn't help, she cried loudly and in such a way that we knew it was due to pain. We managed to not go to hospital, which is lovely! She had no fever, and was breathing normally! The next morning I took her to the GP who said that something (ear drum?) was building up pressure causing loads of pain, and once that burst the pain all went.  He put her on Antibiotics to make sure no infection happens! She is happy and well.

Tova is about 9.7kg and feels heavy to carry! She is still a tiny little spot and next to Nissim, she looks so very small. They are really enjoying hugging each other at the moment, both smile from ear to ear, it seriously is one of the cutest things I have ever seen.

We went to Mullumbimby for Pesach. Yuval's sisters live there.

One of Nissim and Tova's cousins (Lev) was born the day after Tova, full term. Obviously making Tova one day older, and strangely making Tova about 3 months younger.. (Tova born at 24 weeks, born in August but not due till December).

A weight lifted off my shoulders when Tova, Nissim and Lev were next to each other. Comparing their sizes went like this. Nissim the youngest of the three is the tallest and 'fattest'. Lev next, she is taller than Tova, but not by much, perhaps 3cm maybe 4cm. It took some close studying to figure out who is thinner, Tova or Lev.. Lev has no fat on her but has muscle tone, so perhaps looks more 'solid'. Essentially, they are the same size. NICE TO KNOW!

I have some photos of them together that will now accompany me to most medical appointments. I would like the doctors to look at the entire picture, not just their 'text books'.

In other news, at the moment in Australia Bananas are about $15kg, while we were in Mullum we found a road side stall selling them for $2kg.. YUM, we ate about 3kg.

This morning after dropping Nissim off at Creche Tova and I went to Play Zone/Gym.

I was a bit early so I took the time to weigh Tova (fully clothed) on the gym scales.. 9.7something.. Interesting.. I knew her clothes couldn't weigh 600grams, so I remembered to weigh her this evening after the bath on the same scales we usually use..

9.6kg!!! UNBELIEVABLE! I am shocked! It must be all the weetbix! What a fatty piggie!! I love it! I love that she is gaining weight!

Tova has also turned into the queen of key word signing! She says things such as ' I love you', 'Tova/me', 'Ima/you', 'pig',  'bed' and so much more.. It is really great fun talking with her like that!

Nissim talks pretty much completely. There are still a few words that we don't understand.

At the moment he is in his bed crying himself to sleep because I won't let him come into the big bed where Aba is trying to sleep (uv is feeling a bit off, so has put himself to bed).

Our little piggie!

I am not putting this information up for anyone to compare or evaluate. It is simply because I am blown away at how much she can eat and want to share for entertainment value!

Most days she eats something along the lines of this:

BREAKFAST:

2xweetbix

4xtbs yogurt

1xkiwi fruit

1xpear

some water

LUNCH:

a portion of peas

a portion of sweet potato

a portion of carrots (for example, this portion is about 2x medium sized carrots)

a portion of protein (chicken, tuna etc) - this is a good size, I don't measure, but the other day it was 2x normal sized chicken sausages (the big ones).

SNACK:

yogurt (I don't measure, but perhaps half a cup?)

DINNER: is pretty much the same as lunch

Inbetween all this there are drinks of water and milo!!

SHE IS AN AMAZING EATER!

Nissim doesn't eat this much. He can on one day, but the next day he might eat nothing, perhaps only 2 sultanas and a slice of cheese. They are so different.

Happy Birthday Yuval.

This evening, about an hour after Tova ate a MASSIVE meal, I weighed her. Yuval told me to be prepared for disappointment, I prepared...

9.2kg thank you very much!

Last weigh in at home a while back was 9.1kg..  Well done Tinki..

I weighed Nissim yesterday at my gym - 12kg! Well done Nizo.

Where to start?

The last two blogs were about Croup and overnight hospital stays. So, after the last Croup overnight stay we were back in Emergency one week later (just over a week ago).

They kept us in from about 4pm until 2am, sending us home diagnosed with Asthma and with an Asthma plan. I wasn't convinced. But went home as they weren't doing anything I couldn't do at home. Something inside me was saying that they SHOULD be doing more, but they weren't. They were full and busy and for some reason we weren't on the priority list.

That must have been Sunday the 27th of Feb. We spent the 28th watching Tova struggle with breathing and even took her to the GP whom told us that we should persevere with Ventolin oh and the Pred that I had given her (I keep some in the fridge in case). I still wasn't convinced as I could see how different Tova was breathing to normal. I just didn't know how to explain that to the doctors, whom must have thought she was always a little bit bad or something. I don't know. I don't understand why they couldn't see what I was seeing.

The 1st of Feb I took Tova to the GP again, early in the morning. I was worried. She had gotten worse. The GP sent us to the hospital. I asked if I should get the ambulance. He said no. In retrospect, I think I should have called one. The drive there was torture. I am quite shaken up about it. It was scary having such a sick Tova relying on me and traffic to save her life.

Once we got to Monash (from Elwood) we were rushed through and Tova was immediately hooked up to a bunch of machines, given a drip and loads of drugs. The doctors looked worried.

I knew something was terribly wrong when the doctors didn't leave her side for over 2 hours...

PICU was called down as she wasn't improving and they mentioned to me that if she didn't start to improve they had ways of making her more comfortable... I freaked out (in my mind, trying to hold it together on the outside) as I knew they were thinking of intubating her.. The doctor said they would try CPAP if after the last drug they could try didn't work.

The highest I noticed her heart rate was 207. It could have been higher, but 207 is what I noticed and then decided not to look at the monitor again.

She improved ever so slightly, but just enough.

Once Tova started to give me a weary smile about 3 or 4 hours later they only checked her every half an hour then each hour and then eventually we were moved upstairs. To the ward, not PICU!

We stayed for quite a scary week and came home yesterday.

Tova had RSV, Parainfluenza (which caused Asthma) and an ear infection. She didn't eat for about 3-4 days, but made up for it once she started eating again properly on the 5th day. They suspect that it hit her so hard because she was still a bit low from the severe croup (Which almost sent her to PICU the week before).

The first 5 days Tova didn't move. Literally! She was floppy and just wanted to lay still. We put lots of movies on her dvd player for her and I sat there 24 hours a day waiting for our princess to come back to us. Which, by the grace of god, she did..

What a will to breath and live! I am completely blown away by her strength and determination. She is the strongest person I know. Poor Yuval still had to go to work and look after Nissim and the house. The cats tried to make him feel better by offering him 2 mice a night.

We all found it very upsetting to see Tova so listless. She didn't even want to be cuddled. I wish I had been stronger on the first night and told them to keep her in for the night. I feel terrible that she had to suffer so much before something was done. Our little princess.

The doctors say that she may or may not get Asthma without a virus, but they suspect that when she gets sick, that is when she will get Asthma.

She lost weight. All our hard work gone so quickly. We are below 9kg again. I think when they weighed her the other day with her nappy and clothes on she was 8.8kg. I will weigh her soon at home to keep it consistent on the same scales. I am scared to know. She is just so tiny. But yes, she is eating like a pig again. So, hopefully she won't take too long to put it back on and then some more. Please.

Nissim was passed around grandparents (and with Uv of course) for the week. And seems to be as happy as ever. He is lovely. Such a good boy.

So, I am a little torn up inside from the past month of sickness and will never find Hospital easy. It is one of the most horrible and depressing places, yet a place that fixes my babies. It makes my mind messy.

We are now a little paranoid every time Tova breaths a little different and are looking forward to life getting back to normal and me having nothing much to blog about. Other than how fat Tova is getting.

And to top it off, I finally got to the hairdresser today and am now wearing a hat. I am not in the right frame of mind to deal with such a travesty. And to think I was so excited about getting the chance to get my hair done..

Firstly, I don't know why and I haven't had a chance to figure out how to fix it, but Yuval's blog from Austria has vanished from the front end. I will fix it in time.

Secondly, this blog tool doesn't let me read the comments easily and I only just found a bunch of comments recently, so, sorry to the people that must think I have been ignoring you. I only got the comments in the last few days! Thank you for them.

The rest is about Tova and Nissim...

Sunday afternoon we noticed that Tova was breathing and coughing a little bit unusually. Nissim was also coughing and acting quite miserable. I packed a bag ready to go to the hospital. Before Yuval and I made the 'go to hospital' decision we decided to put the ventilator in Tova's room and give her panadol (Nissim absolutely refused to take the medicine). After about 20mins she fell asleep with no coughing or funny breathing.

4am, she woke with barking coughing and terrible breathing.

Nissim was still sound asleep, he was coughing a little in his sleep, but not as bad as miss T.

By 4.10 Tova was being administered Adrenalin and steroids. 'Lucky' we live 2 mins from the hospital.

She didn't respond to the first lot of drugs, so they gave her a second lot (just like last week).

Again, she wasn't improving fast enough so a Dr from PICU came down to check her out. He hung around for a while and then came to see her every half hour or so for about 2 hours.

After another lot of steroids Tova started to improve. The PICU dr vanished and I thanked the powers that be!

When Dr 'eye candy' picu told me that Tova would probably be going there I got scared! I don't even know what he was saying to me, all I could think about was how a friend had a beautiful baby pass away in there and another put in an induced coma..

It was pretty annoying going to the ward yet again, but far better than going to PICU.

Nissim was with Savta Aviva for the Monday as uv was working. When Yuval picked little N up, he took him strait to the GP who said that Nissim had 2 ear infections. He is pretty snotty and coughing loads. Poor little boy.

By the time Tova and I got home on Tuesday I was missing Nissim so much it hurt. We had lots of cuddles and smiles when I walked in the door. He is gorgeous. Poor little sickies.

Everyone woke up this morning a little better. Tova seems fine other than being a little lethargic. Nissim is a pool of snot and coughs but on Antibiotics that will hopefully fix him quickly.

While in hospital no one mentioned that I should tube Tova, again that is a massive breakthrough in my mind.

The dietitian offered to weigh and chart Tova, I said 'no thanks'. She asked why and I told her that the only thing weighing and measuring does is make me stressed, it doesn't make Tova grow. I can't fit more food in Tova as she is a little pig and eats loads each day. The dietitian didn't seem bothered.. I almost fell over backwards.. perhaps attitudes are changing! I hope so.

Stupid tubes.. I hate tubes that aren't necessary. There is no way I could love a feeding tube in a child that is able to eat. I personally think it is child abuse!

Nissim has started Creche. He had three days of orientation last week, which of course went well. I told them on the first day that they were possibly crazy to ask me to stay for three days to help settle him in. It took about 3 minutes and he had forgotten who I was. But they asked me to stay for a while. I died of boredom and tried to keep Tova busy playing away from Nissim. After an hour or so I told them I should go for a while to see how he goes.

I returned a few hours later to a very happy Nissim (as I expected).

The second day I really, really wanted to leave as I was extremely bored sitting around reading to Tova and gaining a massive audience on the reading mat. So I again told them I should go. This time Nissim came with me as it wasn't his official day at creche.

The third day, I didn't stick around to get bored. I dropped him off early and picked him up later in the afternoon. I even went and had a spray tan (with Tova, who ended up getting some on her too). That was fun!

Tomorrow is his first day with no pressure on me to stick around. Which is better for him, Tova and me. He is a social little man that loves creche! And he has been going to my gym creche for years almost daily (only an hour and a half at a time, but it has made sure he doesn't suffer from separation issues). I am very much looking forward to him spending an entire day there.

The staff there are fantastic. They are all so friendly and positive. I am very impressed with the entire place. It is friendly, clean, modern and FUN! They only had one place or I would have put both kids in there. Hopefully another place will come up soon.

So, as Tova has been attending the orientation days with Nissim and I, she of course, unfortunately picked up croup. Tova was due to start back at her play group (it has been on term break) on Thursday, but she woke up not breathing properly.

I gave her ventolin, it did nothing. I waited a while and gave her some more, it did nothing. She was in a very good mood, so I fed her breakfast. She ate it all, 2 weetbix, fruit and a drink. I gave her more ventolin, and again it didn't help. She was still happy but breathing terribly.

Two hours past since she woke up and she was still having trouble breathing. Off to Monash Hospital we went. Croup!

The doctors said it was sever and she was quickly hooked up to monitors and given steroids and adrenalin. She improved dramatically over a few hours. However, we were admitted for the night as apparently croup gets worse during the colder hours of night.

Some how we managed to get a room to ourselves, it even had a view of the special care windows where both my kids spent many months.

The night passed with out too much trouble. Tova did wake during the night and have some difficulty breathing, I was thankful to be in hospital, as if we had been home I would have heard her breathing like that and had to go to the hospital during the middle of the night. The nurse on duty was lovely and said that Tova was doing great, that her O2 was good and her breathing noises were to be expected.

The next day we eventually got seen by the doctors on duty who said we could go home. We had lunch and got home early afternoon. Not bad!

Throughout the entire ordeal Tova remained in an extremely good mood, only skipped on meal (and made up for it later in the afternoon anyway) and was a little bundle of gorgeous normality. Other than the breathing, there was no way of telling she was so sick!

It was quite scary as I didn't know what croup was. The doctors filled me in and gave me some literature to read. They said it was almost definitely something Tova picked up from Nissim's creche... great.. Now I wonder if I should send her to creche at all... Little T and her little immune system.. ahh the life of a micro premi...

Nissim didn't get sick thank goodness. Even thought he was so prem, he seems to be stronger, thank god!

While we were in hospital,  not one person mentioned anything about how small and thin Tova is, no one mentioned tubes even once. It was a great feeling. Tova was treated like a 'normal' person with croup. I was very impressed!

One year ago today we were sitting on a plane heading home from Graz. All of us were eating like people do. It was a huge contrast the the flight over to Graz where the flight attendants fell in love with our story and gave us gifts of well wishes and wine. On the way home we were nothing special, just a normal family feeding our children and watching them struggle a little on such a long flight. It was nice!

This past year Tova has become a professional puree eater. She is able to eat huge amounts happily! For some reason she doesn't put on much weight, but certainly doesn't drop her weight either. The last time I weighed her (a few weeks ago) she was still 9.1kg. She looks a little bit thin but almost in proportion for her height. And is a very happy little girl with energy. So, I don't worry so much anymore. This year has hardened me up and changed the way I view food and eating.

Today Tova has an ear infection, and has had it for the past few days. If the right ear hadn't had a discharge, I wouldn't have even known she was sick. She is eating and drinking and sleeping and acting completely normal. This is the first time she has been so strong while having an infection. In the past a common cold has sent her to the hospital. HOWEVER, she is now on antibiotics as they started to hurt her a little. It is quite remarkable to see her this 'healthy' while sick.

The professors from Austria were here last week. They did a quick trip to Australia visiting Brisbane and Melbourne. In both cities they conducted play picnics for parents and educational conferences for medical specialists. A few other tube mums and I helped organise it. So it has been a rather busy past month for us!

The play picnic (melb) was a great success in the fact that over 50 families attended. It was hard for the professors to talk to all the parents, but I guess if they even helped only one family and raised awareness in many more that is a great start.

The Medical conference here in Melbourne had about 200 people attending and was also streamed live to other major hospitals around Australia. I couldn't go as all my baby sitters were either working or cooking. I was updated by txt message through out the day and then at the end was told that perhaps it was a good thing I hadn't been there as I would have spent my entire time being angry at what was being said by the speakers (all those except the Graz professors).  I am hoping to get a recording of the day, eventually. I think it will also have a home in the RCH resource library and possibly be available for purchase!

Karelle, the owner of www.tubefedkids.com came up for the events too. She gave a talk at the beginning of the medical conference that apparently brought quite a few people to tears. I am sure that had I been there I too would have been moved to tears. Karelle did read me the speech earlier in the week and yes, it really is a moving and well written story.

While MDS (professor from Austria) was here I did get the opportunity to show her Tova. It was a very quick hello as it was getting late at night and Tova wanted to go to bed. But MDS did say that Tova is looking good and not as bad as she had imagined her to look.. That is a good thing. All the mums that organised the Melbourne events and a few others enjoyed dinner with the Graz professors on Friday night. The professors are Jewish, so I invited them over for Shabbat dinner. We all went to my mothers house where my mother in law and my mother had cooked up a feast. There was so much food and extremely lovely company. The night was outstading! I also finally got to meet Tash, who helped me fill out the forms for the funding to go to Austria in the first place. She in turn got to meet Karelle, who had helped her get the funding.

I have spent the past week in terrific company focusing on helping Australia change the way it treats children with tubes/ preventing tubes. It has been incredible. Thank you to everyone that participated and let us watch the change happen asap! Don't worry, we won't let the flame burn out. We won't stop until there is major change to our system. Already there has been interest from a NICU about PREVENTION!! That blows me away! It is fantastic.

On another note, Nissim has introduced us to the world of terrible twos.. WOW. EVERYTHING is NO! Everything! He is very difficult for me mostly, yuval a little and pretty good for everyone else.

Also, he starts creche next week! 2 days a week. I am looking forward to it! He will love it.  I hope to find Tova a place soon too. It would be nice if they were in the same creche, but they only had one space.

Tova is eating well. Good amounts at least. No improvement on the self feeding nor the lumps. Oh and she still needs a song and dance festival (or dvd) to eat to. But yes, eating lots!

We went away on a family holiday last week to Daylesford. We stayed in a beautiful 3 bedroom house. Our room had a massive king sized bed and a walk in wardrobe that functioned as Nissim's bedroom. Our en-suite had a shower, spa bath and of course toilet.

The other king room was for my brother and his family! My mother and Rus stayed in the front smaller room.

It was fun to be away on our holiday with family! We had bbq's for dinner and sat on the deck with our 4 kids. Nissim and his cousin Vicky LOVED each others company! It would be lovely if my brother and his family lived in Melbourne!

We took the kids swimming one afternoon before the big storms (the ones that flooded QLD and VIC) started. Our kids hated it. They have always hated the swimming pool!

Today (back in Melbourne) was a hot day so we took Tova and Nissim to the pool at Yuval's gym. Of course they hated it again! HOWEVER! After 15 or so mins, Tova actually started to smile! In the end she had a heap of fun! I still can't believe it!

Nissim was another story. He REALLY hates the pool. He likes the word and the idea, but once there, he falls apart. After about 30mins of walking around with Yuval, we swapped, uv played with happy Tova in the water and I went and hung out far away from the water's edge with my little Nissim!

Eventually I picked him up and we did jumping. Every now and then I jumped closer to the pool until I was right at the edge. He did notice and did tell me that I should move back to where we started, but each time I jumped with him in my arms he smiled.

So, we got closer and closer until I was standing in the water with a very wary NIssim in my arms. He was holding on so tight (it felt nice as he isn't a hugger normally).

After AGES I was able to walk into the water holding him! He was very emotional and kept telling me 'OUT OF THE PUDDLE!!!  Out of the BIG puddle!!! IMA, out of the puddle!!!'.

Yuval and I swapped babies again and Nissim managed to smile nervously on a step in the 'puddle'! He isn't liking the pool yet, but one big step closer! I am proud of Nissim for being so brave and trusting! Even if he was crying most of the time!

One year ago today we had been in Austria for a couple of days and were recovering from Jet Lag.

Tova was tube fed and Nissim had just figured out how to walk.

This year we are in warm Melbourne happy, healthy and fat.

Tova hasn't been tube fed for almost a year and Nissim is trying to learn how to jump. For some reason he finds it really hard to get both feet off the ground. We need a trampoline.

I guess I can stop worrying about Tova and her eating now. She has proven that she is an eater not a tube fed kid!

Now to master the finer arts of self feeding and eating non pureed foods.

Tova has been eating heaps. Many days she eats more than me! She certainly eats as much as if not more than Nissim!

Her food is still pureed and I still have to feed her with a song and dance for distraction, but she is eating with her mouth!

It is time to move on to the next stage. I don't know how and I don't know if Tova is ready, or how to even get her ready. I guess we keep doing what we are doing and eventually the next stage will happen. It would be nice to not have to sit down and feed her every few hours. But it IS nice to see her eat.

Nissim is talking more and more and also introduced me to the world of amazing tantrums. Wow, some of those tantrums can be fascinating to watch. I filmed one the other day so that I can play it back to him in front of his friends when they are teenagers!!! hehe.

He doesn't have tantrums too often and none out in public yet. Most of the time he is a very happy and very good boy. We are lucky.

Tova and Nissim also play well together now too.

I weighed Tova last night. She is a boring 9.1kg.

It frustrates me that it takes so long to put on weight, for her at least (I on the other hand, put it on very quickly! GO ONTO TOVA FAT! GET OFF ME! Anyway, I digress).

Tova is eating large amounts and often more than Nissim. She is also more active and has more muscle tone than a few months ago, so she should be heavier. I don't understand.

She is absolutely tiny. I wonder if she had been born at term if she would be this small? I wonder if anyone could know that? I wonder if it means something is wrong with her growth? Perhaps there is something wrong with the way her body absorbs food? Perhaps she was always going to be tiny?

The professor from Austria (MDS) and her hubby are coming to Melbs next month. There will be a parents session in a park near the RCH on the 25th of Jan 2011. I hope that lots of tube parents attend and learn.

MDS mentioned in an email today the following two interesting facts:

1. "This year has truly been our Australia-year as to tube weaning in Graz. I think we "did" 41 families from your country 2010"

2. "The Graz neonatal department does not have one single child of 50/year under 1 kg infants (24-28 weeks GA) who left the hospital on a tube.I can never quite believe this but checked again yesterday on this very striking fact!!!"

Unbelievable!

I hope Australia changes it's very wrong ways when it comes to tube feeding! Imagine being like Austria and having none of these tube feeding issues, well almost none! I can only imagine how different not only our lives would have been (and how they would be now) but how different Tova would have and would now be developmentally, if she had NOT come home on a feeding tube! It makes me very angry and very sad. I am angry at a system that has completely failed us and so many other families. Not only have they failed us but they made me abuse my child by force feeding her at times when she clearly wasn't hungry and was clearly VOMITING from being over fed. Yet the dietitians said 'TOP HER UP'.. Omg.. I can't believe I listened to them! I am not sure that I will ever get over that! How could I have been so stupid and cruel!? I should have never listened to them!

I hope they learn from the national conference.

Other than being very thin and short, Tova is doing great.

Nissim is gorgeous and busy.

Not much to report

27-11-2010

Yuval went to visit his sisters and their kiddies last week up near Byron Bay. While he was away I got very sick and had to get my mother to come over and stay for a few days while I died in bed.

Tova ate really well for mum.

Neither kiddie got sick, thank god. It was just me.

Thank god for my mum and Russel. I am not sure what would have happened if they weren't able to help me.

Yuval came home I got better and Tova is still eating really well.

I got a phone call this morning from a friend telling me she just had a 24.2 weeker. A little boy! I lost my breath and held back tears. What a journey they are about to take. But the great thing is that the little dude is HUGE for a 24 weeker! He will be fine and strong.

There isn't much else to say.  I might weigh Tova in the near future, Yuval said she looks skinny.

Memories

14-11-2010

On Sunday I went to a fund raising event for premature births in Australia "Walk for Prems". The even was held at Albert Park Lake.

 

This was the first time I had been back to that park since I worked directly across the road 3.5 years ago, pregnant with Tova. Before kids I worked long hours and weekends and while in the office would occasionally take lunch breaks and wander around in Albert Park. The company I worked for were fantastic while I was childless, young, energetic party goers with a pretty good product to sell. In a nut shell we designed websites.

 

The last day I worked there was only days before Tova was born and considering I was only about 23 weeks pregnant I never imagined what life would be like in the coming days. I remember being at work and having bleeding, it completely freaked me out. All I could hear was a wooshing sound like the wind blowing in a storm and I felt like I had tunnel vision. I walked out of the office and down to the street. When I looked over at Albert Park I noticed an Ambulance and wondered to myself if I should go over to it and ask for help. I was too scared and confused. I rang Yuval and walked to my car. I don't remember much else, perhaps even Yuval came and got me before I got to my car, I don't remember.

 

According to my co-workeres my boss was shouting at me or calling out to me about my work while I was walking out, but I didn't hear anything. I feel a bit embarrassed about that, and am sure that they think I was ignoring them intentionally. I wasn't.  It is strange what shock does.

 

The next few days are a blur but I ended up waking up saturated at some stupid hour of the morning, I got my neighbor to drive me to the hospital where I found out my waters had broken, I was about 23 weeks and a few days pregnant and I knew what it meant as it had happened to me a few years earlier at 22 weeks. I was devastated and sure that I was going to lose this child too. But somehow, by the magic of medicine and a little blue pill, they managed to keep Tova in me until 24.5 weeks when I developed a massive infection and so the magic pill was stopped. She had to be born or we would both die (this was also familiar as it had happened with my first pregnancy).

 

So at 24.5 weeks Miss Tova was born.

 

Returning to Albert Park brought back all those early memories, horrible memories of fear and tragedy. It was however, very interesting to be surrounded by 1000 people with similar stories.  I even met two families with babies that were smaller than Tova when they were born, they were both around the 400 gram mark.. The only other baby I have met in person that was smaller than Tova is her friend William, he was 500grams. Tova was a massive 553grams!

 

Besides that memory lane event of the week, Tova went to the dentist yesterday. As I thought her teeth are eroded from all the vomiting in the days before the fundo. I asked (as I have asked many doctors before but strangely never been answered) why some of Tova's teeth seem to have not grown far out of the gums, the vomit dissolved them. Just brilliant!

 

Now I am even more annoyed at the stupid system for making Australian dietitians and speechies encouraging parents force feed and over feed tube fed kids until they vomit. I have so many regrets about listening to them. I just wish I  had been able to use my own mind and think for myself. Who the hell puts more food into a stomach of someone whom has just vomited because a position on a stupid growth chart. OMG I am so glad I don't do that anymore. I feel so bad about all the abuse Tova suffered because of the stupid tube. And I feel that I have to stop it happening to other children. I can't understand how the medical world can be so stupid.

 

The dentist said that Tova probably had discomfort in her gums. I assume that it plays a roll in her not wanting to eat anything but pureed food. They didn't seem to understand my point and they had never heard of Graz or weaning from a feeding tube.

 

Perhaps we will wait for the public dentist (3 months) or find a good special needs kiddies dentist privately sooner. Poor Tova.

 

Eating is going well. Tova is eating loads. She is still only eating puree, but eating a good amount.  Drinking is going well. She doesn't drink much out of her sippy cup, but I love that she is able. She drinks well from a cup if we feed it to her, that is good enough. She has even done kaka herself twice this week (no lactulose).

 

Nissim is being incredible. He is so good at talking now, but still refuses to say 'Yes', he won't even nod. He is fantastic at saying 'NO' and shaking his head. He is a little treasure.

Hearing and being well

 

04-11-2010

I weighed Tova this evening 9kg.

 

She didn't get sick the other day. Thank god. Nissim however is a little bit sick today, snotty nose, drooling and coughing a little. It is almost as if he is teething. I am not sure if babies teeth at 2 years old, but if they do, that is what he is doing. Otherwise, he is just sick.

 

Tova seems to be really focused and we are thinking that it must be the gromits. Yuval and I are very glad we had them done. Tova is developing brilliantly since they were put in.

 

That's all.

Feeling the Fear

 

30-10-2010

Yesterday we took the kids to an indoor play center as it has been raining for what seems like eternity. We chose one that is called 'eco' blah.. and prides itself in being much cleaner and healthier than a 'normal' indoor center..

 

Tova wasn't enjoying herself for the first half, but once we took her into the jumping castle and Yuval started clowning around like a crazy person, she had a great time. Nissim thought it was simply fantastic. He jumped and fell and laughed and laughed and laughed and ran into the bouncy walls, he was great fun to watch. The three of them were fun to watch. I enjoyed sitting on the edge of the castle talking with my mum, who had joined us for the morning.

 

We took our exhausted babies home where they both crashed into sleep for quite a few hours.

 

At about midnight Tova started coughing. .. .. of course! My little premmi and her little immune system.. At least it was worth it, she really had a great time in the jumping castle.

 

The coughing didn't last all night, we put the vapouriser in her room and it seemed to help. She woke up fine but with a few coughs here and there. She ate pretty good, but not quite as much as normal.

 

The playzone girls said she wasn't quite herself today, she wasn't coughing, just not very happy.

 

She hasn't been acting sick all day, just a few coughs. No temp or green anythings. However, when I gave her a bath I noticed that her PEG site was a bit red and had been leaking a little (so very unusual).

 

After her before bed drink her nose started to run...

 

She is sleeping now, no coughing and no funny breathing.. I hope it is nothing.. But I am bracing myself for the 'no eating' part of being sick.. I hate it, it really scares me.. She is so freeking thin.  But, there is nothing I can do, worrying won't help me!

 

Stupid play center.. They are so much fun, but so sick creating..

Adventures of Nissim

28-10-2010

Today is Saturday, we decided to check out some garage sales with the hope to find some summer clothes for Nissim.

 

The kids are pretty good when we do garage sales. We are in and out and in and out and in and out of the car. However, Nissim found it a little frustrating today and so we opted to take him for a walk around the block to give him some exercise. As we had been wandering in and out of random houses he thought it was ok to enter any house he liked. He ran off down a drive way and into the back yard of a strangers house.

 

Next the we heard was 'oh hello there sweety, where did you come from, where are your parents? etc". We were laughing while walking down the driveway. The lady invited us all (me, uv, Tova and nizo) into her home for coffee. She was playing with her grandson who is a little older than Nissim. Also Jewish (we were in the ghetto) the little boys name is Raffi. It was cute watching them play together and when ever we asked Nissim if we could leave he said a big fat 'NO'. So eventually I bribed him by telling him we could look for Grandpa Russel outside, the moment I mentioned Grandpa, Nissim was ready to go.

 

Tova is eating well. She LOVES chicken at the moment! She is perfecting drinking from the sippy cup and it still blows me away to see her pick it up unmotivated (by me) and take a big (or small) drink. What an amazing baby!

 

I am not sure of the difference the Grommits have made. I can't tell. I am sure they must have made her more comfortable, but I just don't know about the hearing. I didn't think her hearing was that bad to begin with (and the tests showed that she was mostly in the normal range before gromits). So it is just hard to know.

Eating Out

 

24-10-2010

 

We went away for the weekend just past.

 

We spent Saturday and Sunday nights in the middle of nowhere (near Healsville) with no internet and hardly any phone reception. I found that difficult!

 

The kids were good for the not so long drive there. We broke it up a bit stopping at garage sales and a stunning heritage estate now cafe, restaurant, function center. It was hard feeding Tova in the cafe, but she ate ok.

 

When we arrived to our accommodation, the owner wouldn't let us in because it wasn't 2pm yet, and 'check in is clearly stated as 2pm on their website'. pfft. so we hung around the carpark for 30 mins. When we were finally let into the cabin we quickly set up the portacot and nissim passed out almost instantly.

 

That night we met up with friends for dinner at the RSL in Healsville. Our kids had a great time running around and being toddlers. They were adorable. Tova ate ok there too, it was difficult (especially because I forgot to take the dvd player so I had to sing). But it is good to get out, even if it is hard.

 

The sanctuary on Sunday was fun for a few hours. Tova ate ok there too, but again, it was difficult. Mostly it is difficult because we didn't have the high chair. Nissim got very tired, as he does, and we left our group of friends and went back to the cabin.

 

Perhaps next year sometime Nissim will stop sleeping during the day.

 

So, home now, Tova is eating a little bit less than usual. But I am not worrying yet.

 

Gromits

 

13-10-2010

 

Nissim went to mums last night so that I could take Tova to the hospital for surgery this morning for gromits.

 

I got up extra early for me (6am) and got Tova up at about 6.45am. We drove the 2 minutes to the hospital where we waited for 2.5 hours until finally it was Tova's turn for her op.

 

I have now discovered that I am not so good at dealing with Tova and operations. I have never been the one to take Tova into the operating room and holding her while she falls asleep. Yuval has always been the one to do that. He was working from 6am this morning, so it was up to me.

 

If there is a next time, I don't think I could do it without Yuval. I felt like, actually I am not sure what I felt like, I just know that I didn't feel that I was dealing with it well. Watching her little eyes close with the gas mask on her trusting little face. She struggled a little bit and I was told to hold her arms down. Yeh, not for me!

 

I was quickly rushed out of the room and lead to a waiting room where I fidgeted for what felt like 5 mins, until the surgeon came in and spoke to me. He said that it was good that we had decided to go ahead with the op right away, as Tova has weak ear drums that were most probably causing her quite a fair amount of discomfort. He mentioned that it was hard to get the tubes in as her ear drums were sucked right back and surrounded by fluid, but they are in and they will fix everything. GOOD!

 

Then another what felt like 20 seconds and the nurse came and told me I could go to Tova in recovery. She was crying, but being cuddled by a nurse. They were so nice in there (it is a tiny hospital near us).

 

Tova wasn't impressed at all. She really struggled trying to wake up. I know the feeling, I hate waking up after an anesthetic. My poor baby! She just couldn't get comfortable and wow, she cried so loud. At least it was loud for Tova. The nurses were fussing about, commenting on how cute and little she is with her little cry. They made sure that her quiet cry was normal for her and not damage from the tube that she had just had down her throat.

 

It was very hard to not fall apart. But I hate crying in front of people, and I wanted Tova to feel safe and not scared by me crashing around her. So I held it together at least on the outside. The inside of me shattered with every cry she made. Eventually Tova became settled and we were told that we could go home. Amazingly all that happened in the space of one hour almost exactly. Very fast.

 

Tova was pale and very sad, but once in the car she coped a little better. I made a pitstop at the maccas drive thru for a coffee as my eyes were rolling into the back of my head.

 

Once home I put T in her bed. PERFECT place for her. Saba sat in her room watching over her for quite some time. Tova just slept. When she woke I gave her something to eat. She wasn't too hungry but ate. She has been a good water drinking today since waking up from surgery!

 

I missed Nissim today. When he came home later in the evening the table was all set for shabbat dinner (as it is every friday night). He walked in the door, noticed the table, ran over and said "Shabbat, Shabbat, kippa, challah, candles". HE IS SO CUTE! He insisted on wearing a kippa and every time it started to fall off he got upset.

 

Tova spent the day recovering as did I. By the time Yuval got home at around 4.30pm, she was feeling much better. They played and laughed together.

 

Now we wait and watch to see what magic the gromits will do.

 

Today has been a LONG day. Way too emotional for me. I am very sick of seeing Tova suffer and just hope that tomorrow she wakes a pain free little lady with excellent hearing.

 

 

Trying to Get Fat AGAIN

 

03-10-2010

 

We weighed Miss T tonight --> 8.9kg.

 

The hunger strike is well and truly over, so we are now playing catch up.

 

Nissim is something like 11kg, I think most of that is Muscle (something Tova has nothing of).

 

It has been pretty boring around here in regards to food, thank god! Tova has been eating, Nissim has been eating, Yuval and I are always eating! Everyone is healthy. Everyone except me, but I don't count. I get a sinus issue every year, and have it again now, last year I broke my rib from coughing too much! This year I hope to avoid doing that again.

 

Tova has her Grommit op scheduled for next week, I hope we actually get it done this time.

 

We have started to put cotton mittens onto Tova's hands and sticky taping them to her pj's when she goes to bed. This is so she can't suck her thumb. Her thumb sucking is great, except that in her sleep she does it so much that she cuts the inside of her mouth making it bleed. She wakes up screaming, which is horrible. Poor little T. So far this is working really well. Her thumbs looked like they would fall off too, this has all healed now as well.

 

Not much to say is always good!

Syringes are so Yesterday

 

21-09-2010

Tova has decided that she will not drink from a syringe anymore!

 

She is also on hunger strike day 7. I still have most of my sanity as I have discovered losing my mind doesn't help her eat at all. In actual fact, it doesn't change anything other than my heart rate and stress levels. So, yep, I am successfully not falling off the edge during this hunger strike!

 

I can't say that I am liking it much. I feel sad that she got to over 9kg and now, well now I don't know and don't want to know what she weighs. It could only be bad.

 

Today was the first day that I have ever (in Tova's life), taken her anywhere knowing that I/someone would have to feed her and NOT packed a syringe. What a bizzare feeling. I walked out the door feeling so empty handed. I had a sippy cup and my bag!

 

I stopped off at the supermarket (in the car park Nissim kept telling me 'market, car, market'), grabbed the most expensive yogurt in the world and two avocados (these are the only things that Tova is almost eating right now). Then to my mums.

 

No pediasure, no syringes, no tubes. Just normal human food and eating/drinking implements.

 

My mother is so proud and impressed by Tova and her sippy cup abilities. We all are.

 

It is so astounding. I get tears in my eyes watching her take her cup in two hands (with no help from anyone else), tip the cup up and have a big, long and glorious drink.

 

She loves coconut water/juice. She drank the entire sippy cup of it throughout today!

 

We are all a bit sick still, Nissim is snotty and coughing, I am run down and coughing, Tova still a bit snotty and Yuval has managed to escape it entirely!

 

Gromits

 

15-09-2010

 

Tova was supposed to have surgery today to get Gromits!

 

Yesterday she woke up with a cough, Yuval and I took her to the G.P to get their opinion about the forthcoming surgery. The Dr initially said that Tova could go ahead with the op, but then decided to play it safe by recommending that we postpone it.

 

I spoke to the hospital and they recommended that I bring Tova in to see the anesthetist in the morning to get his opinion. So, I got up at 6ish this morning, dragged sleeping Tova out of bed at 6.50 and drove to the hospital. The anesthetist said that it would be better to play it safe knowing Tova's crazy medical history. Surgery got canceled.

 

Now we are back on a waiting list. *sigh*.

 

Tova is a bit sick with a cough, she hasn't had a temperature but she is almost completely off her food! I haven't lost my mind yet. I usually do when Tova doesn't eat. Perhaps I am feeling 'OK' about it because I am 'getting used to it'?

 

She even won't eat for Yuval. He has been really good and trying to help me get her to eat.

 

However, she is drinking kind of enough. I guess it is almost enough. I might give her some electrolytes later. She is sleeping now. Sleep is the best thing for her at the moment and she has been doing lots of it during today and yesterday, not so much over night, which means I am exhausted.

 

Nissim has been at mums since yesterday morning. He dragged my mum out the door yesterday! He didn't even say good bye to Yuval! He is so funny. It was cute to see him waddle off to the car, he looks just like a person.

 

Big Fat Tova

 

11-09-2010

Yuval and I were looking at Tova today and commenting on how 'fat' she looks.

 

We had a big day celebrating the collective 3rd birthdays of Tova and her Premi friends at RMH. Tova and I also wandered around the supermarket and did general playing.

 

Yuval hurt his back this morning and is out of action, he didn't even make it to work he is suffering so much. And omg, please someone call or email him and offer him some sympathy, because I have run out of nice and helpful things to say.. hehe. Men and pain are a funny mix!

 

Nissim had fun at the Premi party eating cake and dancing. Have I mentioned how cute he is? He is so very cute!

 

After bath time this evening I weighed Tova.

 

Now, first to note, Tova isn't constipated.

 

Secondly she is 9.1kg!

 

I had tears in my eyes! FINALLY 9kg.

 

Now I need some time to let 9kg sink in, after I spend some time celebrating that, we start out next fight to get to 10kg!

 

What an amazing little princess. She is so fat! ;-)

 

 

Astounding

 

08-09-2010

 

 

 

Tova started excepting the sippy cup being in her mouth and sealing her lips around the 'spout' AND swallowing.

 

Now she will pick it up herself with two hands and tilt it up so she can have a drink.

 

It is completely amazing to watch. The people at her Thursday playgroup were telling me how impressed they were yesterday.  I had tears of pride and amazement in my eyes. She is really learning allot about food and being able to take control.

 

She does like it when someone helps her to drink, by holding the cup with her, but she is totally capable herself. Unfortunately she isn't drinking much when she does it, but it is a fantastic first step!

 

Also, when I am feeding her and if I am not doing it fast enough, she reaches out for my hand to tell me to spoon her another mouthful.

 

We had a play pic nic today with a little boy called Ash. The family are doing netcoaching and naturally finding the wean difficult.

 

So we sat down on the kitchen floor and food went everywhere. Ash ate very well which made is mumma very happy (and me happy too).

 

Nissim was very impressed by the play picnic and Tova actually picked up some food and didn't drop it right away, and in actual fact put a chip to her lips for a few moments.

 

I think Yuval and I should get it together and do play picnics often! We don't have to have junk food, just normal food will do. I think it will help Tova progress to the next stage of eating! I would love to see her chew! Up until now Tova just seems to let the puree drip down her throat! So, chewing would be a milestone!

 

Nissim is talking in almost sentences. He can count 1, 2, 4, for some reason there is almost never 3. He is making sense with much of what he is saying, but still talks in that georgous nonsensical 2 year old way. It sounds so cute. He is so cute!

 

Tova is eating well at the moment. We do need to find a way to get her to drink more volume. But for now, things are good! I am looking forward to the 9kg mark. Perhaps we shall have a 9kg party when she gets there!

 

Drinking

 

01-09-2010

 

Tova is able to suck from a sippy cup!!

 

She doesn't drink very much, but she is able to do it!!

 

Maintaining Weight

 

28-08-2010

 

I weighed Tova the other night. First I put her on the scales with her clothes on. I thought if she was tiny with clothes on I wouldn't have the courage to weigh her naked.

 

Well she was over 9kg with clothes.

 

8.6kg naked! Thank god we are maintaining her weight again. I am so looking forward to 9kg and above, it can't be too far away now, can it?

 

Tova has been eating so well the past few weeks. She eats more than Nissim I am sure. It is hard to know exactly what she eats, but for example, this morning she ate, 2 weetbix with milk and water, plus half a peach, half a kiwi and 2 scoops of pediasure! PIGGY!

 

I think Nissim weighs about 10kg.

 

The Graz team are thinking about visiting Australia next year, that is going to be fun and very interesting. I hope the Australian medical world listen, learn and follow!

 

The RCH are weaning a baby using the Graz method in about 2 weeks!!

 

 

Birthdays

 

24-08-2010

 

The past 15 or so days have been filled with birthday celebrations!

 

This little Sibony clan now has a 2 year old and a 3 year old!

 

Happy Second Birthday Nissim.

 

Happy Third Birthday Tova.

 

We had a combined party for Tova and Nissim. We even had a blow up jumping castle in the lounge room! It was great fun!

 

There were two birthday cakes, one pink and one blue. Tova isn't ready to eat cake yet (unless I puree it) so she didn't have any. If I remember correctly she did taste the icing! Yumo!

 

We had Tova's birthday brunch at Uncle Marks restaurant, he was away for Nissim's birthday so we couldn't do it for his this year (we have done that for the last 3 birthdays). Tova had a babychino, yoghurt and some vanilla slice birthday cake. However by the time the vanilla slice came out, she was pretty over it all and wasn't hungry enough to eat more than a spec of it. Even Nissim was over eating by that stage!

 

Perhaps next year she will eat 'real' birthday cake! It was a great brunch and I don't mind about her not eating cake. Cake is cake!

 

Everyone has been healthy and happy for the past two or so weeks. Tova has been eating really well. I still haven't weighed her, and our scales are broken anyway, so I can't even if I did get up the courage!

 

Today Tova went to see her PEG surgeon. This time it was the one that actually did the operation on Tova (the PEG and the fundo), we hadn't seen her for about a year. She was astonished to learn that the PEG was out and that we had been to Graz. She reacted in the exact way that I needed her to. Excited, happy, interested! It was a fantastic appointment. She hadn't heard of Graz so I left her with a bunch of information to read! I hope she spreads the word. I think changing the entire medical world all over the world is going to take some time. It shouldn't, but it will! With Austria leading the way!

 

The Sibony household is a happy one, with lots of fat people eating as much as they can! I hope it stays that way, at least for Tova! With summer coming up it would be nice if I could demonstrate some self control.. :-)

 

Concussion

 

12-08-2010

 

So this morning started out as a normal morning. Kids and I got up and had breakfast. Yuval left for work at about 5.30am, so it was just me, the cats and the kiddies.

 

We got dressed and headed off to the gym.

 

The kids LOVE playzone! They had a good session, I watched TV and pretended to work out on the bikes and cross trainer.

 

After my show was finished I went in to get the kids. Nissim was showing off his new trick of jumping on some big blue cushions. He fell off!

 

He didn't breath, went blue and all limp.

 

By the time the ambulance came he was almost normal and very hungry!

 

They offered to take him to Monash, I declined. They gave me tips on how to watch him for concussion over the next few hours.

 

On the way home he fell asleep in my car. I put him in bed when we arrived home and checked him every few minutes. I was so worried that something bad would happen. My mum came over and took over being neurotic checking Nizo every few minutes while I fed Tova.

 

He woke up a few hours later in a beautiful, smiling and laughing mood. OH THANK GOD!

 

What a scare!

 

Tova was such a good girl during all of it. She wanted me to hold her but was very well behaved when she was told that I was busy with Nissim.

 

Thank god Nissim is fine.

 

I think he went blue more from holding his breath than from knocking his head. I have seen him hit his head much harder in the past and nothing happen.

 

 

 

A bunch of 2 year olds

 

10-08-2010

 

Nissim turned 2 the other day! He wasn't supposed to be born until October, but here he is, an August baby!

 

Tova is also 2, at least she is for the next few weeks (she wasn't due till December)!

 

My mum has been teaching Nissim how to eat with a spoon by himself. I have been to lazy and just let him eat with his hands.

 

He is getting good at spoon feeding himself!

 

Tova has been eating well for the past few days. She is still incredibly thin! She was thin on the tube too, so, there is no winning solution.

 

The house is happy and healthy at the moment and filled with all these two year old toddlers!

 

We are having a birthday party on Sunday, one blue cake and one pink cake. It is incredible to think that Tova will be 3! I remember sitting by that bed in NICU, days turning into weeks, weeks becoming months.. It was a LONG time to be in hospital!

 

My little Machine

 

03-08-2010

 

Tova ate so well today at lunch and dinner.

 

She wasn't the best drinker, luckily I add water to all her food or she would dehydrate!

 

For lunch today she ate two eggs, some baked beans and rice!

 

At dinner she ate rice, vegies and avocado. When I made her bowl of food I thought to myself 'I should take a few table spoons out, she will never eat all this'. Because I am lazy, I didn't take an y food out and Tova ate it ALL!

 

Nissim has been a good boy mostly today. Things are still frustrating him, such as getting lids on and off containers, not being able to reach things that are up high, not being able to do his zipper up on his jacket and so on.

 

I think Nissim is missing my mum who has been working full time for the past few weeks! Normally they spend at least one full day together. At the moment it is ZERO!

 

Tova is eating well so I am feeling less stressed thank god!

 

New Site Home

 

31-07-2010

 

Welcome to the new Tova Sibony site!

 

Tova has been eating well over the past couple of days. It is a huge contrast to last week, thank god!

 

I haven't been giving her as much or any pediasure, so she is eating more. Pediasure makes her very full. I have been adding stage one formula to her food and giving her lots of water in between. She is so happy and full of life!

 

Nissim has been very frustrated with the world of late. He needs words, actually he needs sentences! They are coming, but not quite there yet. I am trying to get him to understand that instead of crying and fussing, he should use words.

 

It seems quite crazy to think that he will be 2 in about a week! That is just crazy talk! Wow, and Tova will be 3 in a couple of weeks. How did all this happen?

 

So, life is good at the moment.

 

We are all eating.

 

Horrible 10 Days

 

29-07-2010

 

 

The  past 10 days or more have been horrible.
Tova went from eating not much to eating nothing then back to eating not much.

After her breathing became laboured we took Tova to the doctor. She had an ear infection and bronchitis! No wonder she wasn't eating.

Nissim also had an ear infection, so both babies were put on Antibiotics. They are on their last couple of days of the antis and are both SO VERY MUCH BETTER!

Last Friday a friend lent me her probey thingy that reads the oxygen levels, Tova was sitting down around 90, so I took her to the hospital, once we got there she got up to 96!!
I took her straight home! It felt great to have made it for more than a month without needing to be in hospital! It felt great looking like an idiot worried mum even!

Nissim was absolutely revolting while he was sick. Crying, complaining, crying, complaining, it was so hard to deal with him.
Thank god he is back to normal now.

I was also sick during the last 10 days, which made everything harder. Again Yuval didn't get sick!

Tova must be some very scary low weight by now. I am too scared to weigh her. Last weight about 2 weeks ago was 8.3kg.

I am looking forward to bigger and fatter things in the coming months!

Tova has been eating very well for the past two days! I am happy when she is happy.

Perhaps the sickness for the winter is over? I hope so. This has been our worst! I think it must have something to do with the kids being so much more social this year. Well I am going back into my hermit shell for now!

I seriously didn't cope well over the past 10 days. But things are looking good again now.

 

Freaking out

 

20-07-2010

 

Dear G-d!!
Seriously, why is it so hard? I don't find it hard to gain weight, I don't even have to try nor eat much. Tova on the other hand can eat more than Yuval and still lose weight.

I don't weigh her often because I prefer to judge her health by her over all demeanour. But when I do weigh her I expect to see positive feedback like GAINING ANYTHING, even 1 gram!! ffs!

She is 8.3kg, we should be hitting 9kg now dam it!
My brain hurts.

HOWEVER!!!!!!!!!!!!!!
After completely freaking out I wrote to Graz, they have calmed me down for now. Everything MDS says makes sense. I am so relieved to have her feedback.

I have gone from very worried to not so worried.
But I would love to buy my soon to be 3 year old some clothes bigger than size 1!
I feel quite drained. This is an insane emotional and physical journey.

I found Tova's PEG the other day, it didn't upset me or flood me with bad memories, it made me feel happy, I wanted it back in her! Scary!
And I don't really want it back in, I just want her to get FAT!!
When I think about it, the PEG feeding wasn't making her put on weight either..

Tova is happy and healthy in her actions. She has started being a little bit too clingy with me though.

Nissim has been a really horrible child since returning from Tassi. He seems to wake up in a bad mood and stay in it until he goes to bed at night. Maybe teeth? Maybe frustration, who knows.. He is 9.4kg weighed today.

 

Flatness

 

15-07-2010

 

Personally I am feeling a big flat this week. And today I have been feeling dizzy all day.

But this isn't about me!!

Tova had a hearing test today. She has fluid in her ears again, so Gromits here we come.  She is booked in for early September.

Tova hated the hearing test as she hates dark spaces (I can't park the car in an underground car park if Tova is with me). She cried so much and was so agitated I almost walked out.
After about 10mins of absolute distress Tova noticed a highchair in the corner of the little soundproof booth and asked to go in it. Once she was in the chair she was happy, but totally failed the hearing test.
I am fine about it as I know it isn't permanent and there is something we can do about it, and we are going to do about it.

I hate having to use the ear plugs for every bath and making sure no water goes in her ears. But at least now  she is happy to sit in the bath, last time she loved to lay down in the bath. It is just a hassle dealing with the plugs.

Nissim has been a grumpy bum for the past few days, I think he is getting frustrated with the world the more he wants to do things but can't yet.

Vicky and Jessy (my brothers beautiful children) and their parents came over today. They are so gorgeous. It was lovely to see all those cousins playing together.

Tova is eating fine. I haven't weighed her again since the other day when I nearly fell over backwards because she had LOST weight. I am pretty scared to weigh her now. But I think it is important because if she gets too low we will have to think of some solution. Perhaps I will weigh her in the next few days.

The tube is out but the battle is ongoing.

 

Ups and Downs

 

10-07-2010

 

I am pretty over the ups and downs of it all. But I know there is nothing I can do other than keep on keeping on, and I do it happily.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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I think it works out to be about 36 hours of travel time from when we left the guest house to when we arrived at our front door.

It is strange to think we were in the snow just the other day and today we are melting with the rest of Melbourne (actually it hasn't been too hot today).

Before we left on Saturday, a new family arrived at the guest house with their tube fed daughter. They are from South Africa. We offloaded all the extra things we weren't taking back to Australia (mostly food). We took them for the walk to the hospital as we had our last meeting at 12. They were as grateful as I remember being when we first arrived and met the NZ family who showed us around!
Nissim and their daughter are about the same size and age and played together so well it was a shame they hadn't been in our group.

The flights home were easy enough, we wouldn't want to do it again anytime soon, but it wasn't too bad.

We started with an hour or so delay from Graz to Frankfurt (snow). After getting bored in the business lounge we discovered a kids area with a slide and climby thing in the boarding gate area.
The snow looked beautiful falling in the bright lights of the airport runway. Once we boarded the plane they had to wash the snow and ice off before departure, which took ages.
Finally in the sky and flying up through the snow, wow, I have never seen anything like it. Because we were going so fast the snow looked like streaky white lines. It actually looked terrifying. Nissim slept in my arms for the hour long flight.

We didn't have long to wait in Frankfurt, so no business lounge time. We found our way from Lufthansa to Qantas with not too much trouble. There were a few very helpful people scattered around the massive maze of corridors, thank god.
We had priority boarding as we have bubbies and got on first.
One lovely thing about Graz and Frankfurt was that they let us keep the double pram right up until we walked through the boarding gate! This made a HUGE difference as we didn't have to carry kids and carry on bags.

Flying with the babies isn't hard, it is the 'in transit' bits that are difficult and exhausting. The babies don't cope well in between flights, Nissim hates that he is woken up and then not allowed to run around everywhere and Tova just hates it because.

We fed Tova in most boarding lounges, with the syringe, at least these days there is no tube going into her stomach! It just feels a bit funny in public.

Lovely business seats! Nissim remembered all the fun things from our last flights 5 weeks ago. He played with the light, on, off, on, off, on, off, on, off. We were happy because he was happy.
We had two seats at the window and one seat on the isle, the window side also had the bassinet, a blessing!
Next to the isle seat were two passengers who had been upgraded from economy seats for free. They were a lovely couple who have been married for over 40 years. They gave us some magic stop jet lag pills (herbal), that have so far seemed to have helped. The kids were great and slept lots and played on the massive seats and 3 rows worth of room we had. How will we every fly economy again?

In Singapore we didn't have time to go to the business lounge as there wasn't long until our connecting flight. The kids were very unhappy to be woken and restricted yet again. Poor little things. Yuval and I were pretty tired and both trying to keep it all together while waiting for the gate to open. Again, priority and first to board. Upstairs this time. Newer plane, slightly different and nicer seats.
After stressing out a very nice flight attendant by rearranging about 6 passengers we managed to have the two seats at the window with the bassinet and an isle seat next to another family of 4 (one in the middle and two by the other window). Also after a very long time on the tarmac with very unhappy restricted babies we were finally in the air and able to let the kids be free. They both slept, watched tv and played nicely..  

We had a straight flight from Singapore to Melbourne, making it easier than swapping planes at Sydney.

We landed in Melbourne, no more security checks, no more changing planes, only one more taxi ride with the destination of our house! It felt really strange.

Tova recognised the area around Chadstone and was mesmerised looking out the window the rest of the way home.

36 or more hours later we arrived at our front door. The grapes are growing but still not ripe, all the plums are gone from the front trees (we missed eating them this year), there are ripe figs on the front tree, the vegie patch has an amazing array of ready to eat food and mum had left heaps of cooked food for us in the fridge. She had also left Tova some baby fruit puree and pudding! She is the best mum in the world!

Our new laundry is ready to have the washing machine put in it (should happen today) and I had the first shower in the new bathroom.

The kids were happy to see all their toys and bedrooms.

The grandparents said we don't look too fat, they were expecting allot worse, especially with Nissim. They did notice how skinny Tova has become. 

I felt the emotion and pride in my mums voice when she watched Tova eat for the first time yesterday. Mum says that Nissim looks more grown up, like a little boy now, she is also impressed about his walking skills. Grandpa Russel got a hug (I don't even get hugs).

So, after much sleep and not too much trouble I have awoken at 7am on Tuesday the 2nd of Feb 2010 in my bed in Melbourne, feeling fine, a bit heavy, but fine.
The kids almost slept through the night from about 10pm (one feeding frenzy for us all at about 3am) and are still asleep now at 8am (so is my lovely exhausted husband).
I have a feeling that my (and Tova's) jet lag wont be so bad this time.

We haven't tube fed Tova for more than a week, and in the last 3 weeks we have only fed her a little bit via tube when she was sick.
We will take the tube out today or tomorrow I think. WOW! I will have to blog that.

No more snow! It is already hot this morning.

Tova is an eating person!

Our new life starts now....

 

{gallery}MyImages/JourneyHome{/gallery}

We are ordinary people, walking around the town, eating, drinking, looking at sights! Well, mostly ordinary, we still have to feed Tova from a syringe, but at least it goes into her mouth not a tube connected to her belly!

Tova is weaned. That actually means that Tova eats to survive, with her mouth, food! Not milk and not via PEG. I am still trying to get my head around it.

It was a bit sad today, saying goodbye to the people that have helped change our lives forever. Especially Eva, what a remarkable person. We owe so much of Tova's success to her. Thank you Eva.
The entire team are incredible. Special people doing something that is so dramatically life changing for others. Thank god for people like them.

Nissim went out with a bang at play picnic today. All I have to say about it is, look at the photos.

Tomorrow we are going to see Prof. Marguerite at midday. There is apparently a play picnic, not sure that I want the kids to participate as I have packed their clothes.
Oh how I hate packing! At least it is 'going home packing', which is much easier than the 'going away packing'.

After the hospital today we went on the 7 to the end of the line, to find a mythical shopping center. On the way back we stopped off in town and had a walk around. Again, I bought something in addition to buying food. woohoo.. I now have 3 things from Graz (and a new body shape).

Well, what a journey. All the way across the world. It is nice to think that in a few days we will all be in our own space in our own beds and OMG, I will have someone other than Yuval to talk to. You know I love you lullie, but OMG, hehe...
We have been joking about spending some quality time together when we get back.. It is all in good fun.

I am not sure what I will do with this website now. Um, watch this space?
I guess I will have some going home photos and stories to add. People in Graz might want to be updated from time to time about how Tova is going. So I might keep it going. Unsure.

I will write once we are home.

Thank you EVERYONE for your support. We honestly couldn't have done it with out you.

See you in Australia.

It really isn't weaning anymore.

Tova doesn't use the PEG for anything and we feel very confident about it all.
Drinking is getting easier and she eats like a true Sibony (almost).

All Yuval and I are thinking and talking about is HOME.
The news said to expect delays because of the snow, as long as we are in a big airport with the lounge, we will be happy. Especially Yuval, if there is free food there is a delighted Yuvie!

Yuval is feeding T next to me in bed! She looks incredible moving her little lips and I can hear her swallowing. Beautiful (90mills of carrot puree eaten!).
This has been and still is one of the most remarkable journeys of my life. I am completely blown away about this program. There must be a way we can help establish this in Australia. I wish I had studied medicine at uni, I would run the clinic myself!

This morning Nissim and Yuvie went to breakfast at the main house. Tova slept in, so I stayed with her. They boys had fun and apparently fell over in the snow (no one hurt).

We had OT and Play picnic today. Both were good. Oh, I forgot to weigh Nizo. Perhaps tomorrow if I remember.

Two more sleeps! WOW!

TOVA EATS!

Nissim has a massive black eye. We think it is from falling off the bed the other day. It looks so horrible, poor baby! It isn't bothering him, nor are the four new teeth trying to all grow at once.

Tova had OT first this morning, everyone had fun. The OT has a big 'bath' of lentils (raw) that Tova sat in and Nissim put his hand in. Lots of fun!

Physio was good as usual, Nissim played and talked and walked around while Tova had cranio. Eva agrees that by looking at Nissim for more than a few moments you lose a year off your life (he crashes lots).

In play picnic Tova started by eating her daily Nutella packet from my finger, YUM.
The doctors came in and asked about having Tova's PEG removed, but after talking to Yuval and the Irish family, I think we will leave it in till we get home.
There really isn't any reason to leave it in nor any reason to take it out. May as well leave it in and not worry about it for the journey home, It is VERY easy to take out, we will do it ourselves once we are over jet lag, perhaps...
Who knows how we will feel in the next few days.

Tova is eating good amounts now. She is hovering around the 8kg mark - SKINNY. Hopefully when we get home we can fatten her up by adding cream and oil to her food. I am now also adding water to everything she eats and not putting any in the tube.
We spoke to the dietitian today, she had a few tips which is helpful.

There were more comments today about weighing Nissim. hmm.. Poor fat little dude. If I remember I will weigh him tomorrow. I think he was just under 9kg when we left Melbs. I have to check his records when we get home.

We jumped on the number 7 tram to the town again today. Just for something to do as both babies had fallen asleep in the pram. I actually brought something today, a dangley thing to hang on the window, and food!
The sun was shining today which was nice. A beautiful blue sky!
It is still freezing.
I think this morning was the coldest morning of our stay so far. The river next to the hospital that usually, remarkably remains running, was today almost completely frozen over.
According to CNN (our only English TV channel) there is more snow and cold to come.

Lucy (Irish) has started to eat! It is completely wonderful to see her eat, she still puts up a bit of a fight, but I think it is just from habit. She always looks so proud once she has actually eaten her yoghurt! Well done Lucy! They are going home at the end of the week too.

Home is so soon! We are very excited to be going home!

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While you have all been sleeping in Australia this is what we have been doing in Austria.

Tova had a small breakfast, we think she has a slight cold, so fair enough.

We walked to the bus in the 'pouring' snow (it hurts when it gets in my eyes). Physio was at 10am. Both Tova and Nissim enjoyed that.

Play picnic at 12. Nissim was in fine form, jokes were made by specialists about what he must weigh now.. We should have weighed him at the beginning - how could have we known.

There has been some talk of removing Tova's PEG on Thursday, but no one, not us nor the doctors can make that decision until Thursday. My ONLY concern is the amount of water she drinks. I have to have a chat with them about that. Gosh, I can only imagine seeing Tova without something 'medical' about her.

After the hospital we went into town, it is so freezing these days, even my super jacket isn't keeping me warm. We, as usual didn't buy anything (other than food). There really isn't anything here we can't get at home, and for the same price. It was fun to walk around and look at the beautiful old buildings covered in snow.

Tova has had a pretty good eating day, and again ate a fair amount from the spoon with Yuval.

Nissim has a new trick in the bath where he tries to doggy paddle, we have to take him swimming when we get home. There was swimming at the hospital today, but Tova hates it so we didn't go.

That is pretty much it! The guest house is big and empty, just us, the old lady and her cat.

Home in a matter of days and a thirty something hour journey!

I am still feeling a bit traumatised by last week, but things are definitely improving.
Everyone slept in this morning after a late night last night. We got ready and walked through the falling snow to the hospital.

First was OT, she is brilliant. Tova loved it (so did Nizo), next was Physio (Eva), always good.

Before play picnic each day we weigh Tova, today she weighed 7.99kg. She gained more than 100grams over the weekend just by eating with her mouth!
This is such fantastic and encouraging news. If only she would drink water as well as she eats food! She will!

There are four babies in play picnic now. Lucy, Tova, and two other babies that started last week. It is a nice group.
Nissim sits in the middle of the floor now and entertains everyone.
He also grabs and eats food from babies that aren't interested in eating (ALL OF THEM!) and tries to feed the parents and specialists! Good fun to watch.
One parent that had been away for the week said that Nissim has 'filled out' hehe,, FAT! We all have 'filled out'. I guess that is what happens when you go to a freezing country to an eating school!

I love having Tova back. She is happy and playful and very excited about food.
She ate about 500grams of food today, 100g from a spoon!
Yuval was in the kitchen with Tova in the highchair (I don't go where she can see me or she gets upset) doing their normal play with the spoon and food. After they had been in there for a while Yuval came out with an empty container saying 'guess who just ate all of this?' UNBELIEVABLE!

We are all happy again.
Missing home but happy!