Nissim is almost a walking boy. He has been transitioning for the past week or so and now mostly walks with the occasional crawl. He does lots of falling still, but more coordinated falling than a few months ago. He has also started to bite everything including me, mostly me actually. People have commented that he is a happy boy and he gets lots of laughs from his audience and fans. It is nice to see him so happy.
We had an early start today, we were late.
Physio, Occupational therapy and Speech. Music therapy was canceled. Of course there was the play picnic at 12 too.
Physio with Eva was fantastic. Eva is a remarkable therapist and person. Apparently Tova and Nissim (Nissim is almost always included in therapy) speak fluent German, as they understand every word Eva says.
Eva has a special way with Tova, firm yet compassionate. We would like to take her back to Australia with us (we would have to fight the NZ family for her first though).
Tova has been in great spirits all day, almost her normal self. Big news is that she maintained her weight over the weekend. Friday she was 8.12 today she is 8.12! This confirms that she is eating. Tonight we give her NOTHING via the PEG, we gave her 50 mills of water and 50 mills of milk last night.
Eva showed us how to feed Tova with just one of us. Much easier than the crazy process we have had to do together every two hours. Perhaps now we can take it in turns, all though, Yuval seems to have taken the biggest role in feeding Tova at the moment. I suspect that is why Nissim has been a bit jealous; he had become accustomed to being Yuval's number 1 man!
Seriah still isn't eating, but walked cautiously into the play picnic and picked up a chocolate today. Oh and that reminds me, Nissim stole a chocolate off a baby today, and tried to take the sandwich from the NZ mummy.. he is so funny.
Yuval and I have bought more food. We are all eating heaps, that is the idea. Apparently babies of dieting parents take longer to eat than those of piggie parents. This is why Tova is eating so fast!
So, Tova is eating! From a syringe, but eating! We will slowly (or quickly) move to using a spoon, but who really cares how she eats.
Today has been good.
We went for breakfast at the main house today. It is a fun walk through the woods in the snow. We can't take the pram so we carry a baby each. The owner of the hotel is always happy to see Nizo and gives him a gift each time we see him.
Again today was a focus on Tova and getting her to eat. We didn't do much else. However, the day has gone pretty quickly and Tova is a happy little girl.
Both Yuval and I are feeling much less stressed as we both get a hang of the rather involved feeding Tova Process.
We lay Tipi on Pillows, I hold her head and sing and Yuval squeezes small amounts of pureed food from a syringe (3 mill) into the little mouth. This is working very well.
Tova has had about 30mills of food every 2 or 3 hours. We also spend time playing with spoons of food and the sipi cup. She lets us know when she is finished by crying and trying to get away. We don't force her.
I made mashed potato for dinner and some fish, Nissim loved it. I was being a piggie with a massive dessert spoon of potatoes about to put it in my mouth when a little Tova (whom I was holding) leaned forward and took a mouth full. WTF? This is the first time Tova has ever eaten anything I have made and the first time to take a mouth full. Who is this eating child? Truly amazing.
I feel like my mind is playing tricks on me and for every good thing I keep reminding myself that we are in a roller coaster and who knows what tomorrow will bring. The hospital team have said that the second week is very hard and for every step forward there are usually two steps back.
When I bathed Tova this evening I nearly vomited from seeing how thin she is. She is eating, but not enough to sustain her weight.
Last night we waited for Tova to fall asleep and then gave her some magic water and a small feed of pediasure via PEG. I think we may do the same tonight, even though for dinner Tova had about 30 mills of water (via Mouth) and 50 mills of puree veggies (via Mouth).
I am sure that after Marguerite hears how well Toki is doing she will tell us to stop the night feed again tomorrow night.
Tova has a new game with Yuval now, she demands to be put in her high chair to play food games. Food seems to have become something fun for her. Wow, what a relief.
The NZ family upstairs are also amazed at the progress of their little bubba, who is also eating little amounts.
This entire week has been unbelievable. I can't believe we are in the snow in Austria. The other side of the world from home.
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Snow, snow, snow, snow and more snow.
Baileys on snow.
I have had fun wandering around in the woods (snow up to the top of my boots) taking pictures and feeding the farm animals apple.
Nissim hates the snow, and shoes. He cries if I put shoes on him and cries if I put him in the snow. I have a fantastic picture of him with shoes on and in the snow! Not happy at all! I am mean! hehe.
Yuval and I haven't bought anything in Graz so far, other than a massive amount of food. I hope to change this and eventually go to the indoor shopping center for some retail therapy. We may go to Vienna one weekend with the NZ family. This all depends on Miss T and how she is feeling.
Nissim is enjoying watching TV in German! He is also an expert volume controller and channel changer.
No hospital today. It is a nice break not having to schlep through the snow with the double pram. Nice not having to talk to anyone too. Today has been a focus on Tova at home.
Tova has actually opened her mouth for water today. Astounding. She has also been in a great mood, laughing and playing with her Aba. She has eaten about a teaspoon of pureed food every 2-3 hours today and had quite a few sips of water. It is mind blowing to see her actually open her mouth for water and put her lips around the sippy cup.
Even with all these positive things happening, today has been hard. Tova is very skinny. I keep thinking to myself 'What the fu#k are we doing, and by choice?'.
I got an email from a friend today that reminded me of when we watched Tova learn to breath in the NICU. That took five and a half months and was exhausting, yet learn to breath she did (thanks Laura)!
I remember when Tova was taken off the tube and put on CPAP, we were so proud and happy, only to be crushed a few hours later when she had to be intubated again. This eating process is right up there with that. We worry now because food sustains life and we are depriving her of that. But, yes we know the success rate this Graz clinic has and are confident we won't bring their stats down.
I am also anxious to see them break Seriah (the princess that can't even have food touch her). She is completely normal in every other way, not delayed in her development or anything, just a fruitloop when it comes to food. I just can't see how they will get her eating.
Again I have to thank everyone that has written to me. The emails I am getting are helpful and very much appreciated.
So now I drink my Baileys on snow and relax as my children go to sleep.
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A new velvety blanket of snow greeted us this morning, and to Yuval's delight, it was still snowing. It actually snowed for the entire day and is still snowing now in the evening. I just went outside to take some night shots and the snow has become so deep it is up to the top of my snow boots!
Nissim is living off chocolate, cake, candy and biscuits. He had never eaten any of these foods before Austria. I hope it isn't hard to get him back on track once we get home.
Tova had Physio with possibly one of the most incredible physiotherapists in the world, Eva. That was a great session. She got Tova to eat about 10 mills of pureed fruit. She also was concerned about Tova not eating anything so ordered a blood test. OT next and then we went to speech therapy. It is incredible having therapy every day.
The blood test was a finger prick, it wasn't as bad as I imagined.
The specialists were concerned with Tova's lack of energy and gave her 150mils of energy water in her PEG, and fed her another 10 or so mills of pureed fruit (via mouth). Tova fell asleep on the picnic floor.
She had a second blood test done.
Comparing blood tests showed that Tova was feeling particularly crap in the morning and the magic water in her PEG had made her feel much better in the afternoon.
We have some magic water for the weekend and if we want to we can decided to give her a night feed (PEG) of milk. I think we will.
Our new plan of action is to use a little 4 mill syringe filled with her puree and slowly get her to eat about 3 syringes every 2 to 3 hours (via mouth). This seems to be working so far. It is all about trial and error.
It is a pretty horrible feeling, but we know that in about 3 weeks our blog will read 'PEG out, Tova eats! Coming home!', so it is worth it.
Thank you again to everyone who is emailing and facebooking us with such support! We all appreciate it.
Not sure about going to shull tomorrow. The snow makes everything difficult with no car. It was nice having someone say 'Good Shabbas' to us in the hospital (Jewish doctors).
Most parents are looking exhausted already and it has only been 5 days. Next week it is supposed to get harder. They say that it is 1 step forward and 2 steps back. But by the end of the three weeks, it is an eating baby!
There are rumors that Australia will be the next country to have this clinic!!
Yuval has been eating cups of snow with cordial. He is in much better spirits today. We all are after Tova having magic water and little amounts of food. Thanks to Eva the physio.
There is a long road to go.
My husband and my kids are incredible!
It feels like we have been here for all eternity. It is cold, dark, slushy and wet. Yesterday the snow was beautiful on the roads, today it just looked dirty and got in my way. I don't mind it on the trees and in gardens, it looks beautiful there, but it was annoying to have to try push the pram and walk through it.
My soul is having a bit of a headache today. I knew that starving my child would be hard, I mean I knew those words, and I had said those words many times in preparation for this process. But now I feel them.
Tova has eaten tiny amounts of food and little sips of water today, but we can see her energy levels going down. She still has smiles for us, but she isn't the same. She hasn't lost too much weight, about 200 grams. Nissim is heavier than her now.
Yuval has had a very hard day today.
I know there is a light at the end of the tunnel, and the specialists are very happy with Tova. They say she will eat. She is ready!
Tova isn't getting any PEG feeds tonight. Her last PEG feed was last night at 8pm. Tonight after she goes to sleep she is allowed to have up to 200 mills of water with sugar in it. That is it!
They are lucky they have a 97% success rate or I would be on the first flight home.
The hospital specialists are amazing and supportive. We are lucky to be here!
Nissim had fun as usual eating everything we don't want him to eat. He again was complimented by the specialists who said he was worth an entire team of specialists! He is amazing. Such a cute little man. His walking is getting much better too.
Nissim made a friend with a baby girl his age today, they met some clowns and laughed together (photos below).
The walk up the hill to the house is getting easier every day. The goats that bleat at us at the top are getting louder and more desperate for us to feed them, they are so funny looking. I will take some pics soon and upload them.
Tova is in bed watching Einstein, her favorite show.
It is a few hours later, Tova can't sleep because she is too hungry. I can't give her sugar water till she is asleep.
Yuvie and I just tried to feed her, she isn't really interested. She had a few sips of water.
I just gave her 40 mils of sugar water (PEG) to settle her. I hope she sleeps now.
Yuvie and I have swapped moods now. I was strong and happy today and Yuvie was falling apart. I am the fally one now and he is feeling fine!
Good times!
I am sure Tova thinks we are idiots, she is telling us what she wants, we have done it a billion times before, yet for some reason, unknown to her we have all gone stupid.
She is sleeping.
Ok, so after a peaceful night of sleep Tova has woken in a good mood. She had a tiny sip of water, but isn't interested in eating.
There is a fresh blanket of snow out side. And it just started to snow. This is our first snow during the day. It looks beautiful.
I hope today isn't going to be as hard as I imagine it to be.