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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.

Croup
swimming and eating