An Emotional But Great Week

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.

swimming and eating

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

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.

Quiet Times

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.

Frustrating but OK

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.