Jan 4th 2010
Tova and Nissim were both exhausted and asleep at 6pm! My eyes are also shutting as I type and it is only 7pm.
So, today was interesting. We met the other families, there are about 6 kids in our group. Some families don't speak English so I don't expect to get to know them too well with my very limited and mostly useless amount of German. I can say very helpful things like 'Good dog' and 'Sweet small child' oh and 'OUT!' in German.
Other than the NZ family there is one other English speaking family from Ireland. This family have 18 month old twin boys who are at home. I can't imagine how hard it must be for them to be away from their boys.
We met all the specialists today in a little room, Nissim enjoyed playing on the floor with toys and was extremely impressed when the doctors brought in trays of food and put them on the table for the kiddies to do what they pleased with. Tova rained lots of food on Nissim, who graciously vacuumed the floor with his mouth. No other bubbas touched the food. Tova touched everything, as the playzone girls know, Tova loves to 'cast', and cast everything onto the floor she did.
After this meeting we went and had Toki weighed (8.5kg), measured and fat content assessed by Petra one of the PhD students. Then a meeting with another doctor to talk about the history of Toki, then to the play picnic!
Play picnic happens every day at 12pm until 1pm. It is in a small room where they put sheets on the floor and place plates and bowls of food all over it. Nissim was driving me crazy so I set him free in there first. The rules are 'the kids do what they want', so I took his pants and long sleeves off. See photos for the damage this little boy did!
Tova played with food in her hands (lots more casting food aside) and licked a few things. But most of the time she was absolutely mesmorised by her little brother. Nissim ate EVERYTHING, and even stole food from other babies.
One little girl got some food on her hand and FREAKED OUT for the rest of the hour, the Irish mumma said her daughter would be the same if food touched her.
After play picnic we cleaned up the kiddies as much as possible and went to see another doctor, Marguerite. She told us to skip the mid day feed today! Tomorrow we skip the breakfast feed and the lunch feed!!
At home around 3pm Tova was feeling hungry (her feed was due at 4pm). Yuval told me he had a headache, so I asked him if he wanted a drink of water. I looked over at Toki, who signed (makaton) 'drink, more, more, drink'...... poor bubba. So I gave her a drink from a cup (using her mouth). She had her normal 'sip' and seemed to be happy enough, her version of a sip is really just licking the glass and getting water on her lips.
Yuval is starting to feel a bit of stress for Tova, I think reality is starting to hit home for him. His little princess may suffer a little and possibly lots, over the next days, that is very hard for him to see. It is very hard for any of us to see.
Tova didn't tolerate her 4pm peg feed so well today, I think because her stomach was empty for so long and I possibly put the milk in too fast. Tomorrow I will do it slowly.
I can't believe Nissim hasn't vomited after the amount and variety of food he has eaten today. I am so glad that he is involved in this adventure. The doctors say that he is worth two specialists. Little man!!!
The head doctor, Marguerite is Jewish and has told us that the Shull doesn't have a service every week, she is going to get some dates for us. It is nice to have someone understand some part of our culture. They have arranged it so that the play picnic will never have any piggie meat just to make things simple for us all!
So here we are on day one. Wow. The reason we are here has begun, it still feels somewhat surreal.
Tomorrow we have Occupational Therapy, Physiotherapy, Swimming, something called LOGO and play picnic. Each day there is therapy for Tova (I wish we had this at home). If nothing else Tova is going to get some amazing therapy while we are here.
It has begun, we now wait, watch and work hard!