Today we had an easy day therapy wise, only music therapy at 11:00, then play picnic then speech therapy. Music Jason loves, he knows that music is fun and he can bang on that drum and no-one is going to touch him or try and get him to eat. He just drums while Brigit, mommy and daddy sing the “wheels of the buss” or “this old man”. In music Brigit also tries to get food involved, she has a banana and apple shaker and then brings a real banana, plate, knife and fork and Jason was pretty interested in that banana, obviously we all have to have some to show him eating is great. He did gaze over that banana a few times, speared it a few times and even once took it to his lips but changed his mind.
During play picnic, both Bruce and I were able to sit in today as there was more space in the room. We took our sandwiches as we are instructed that we must eat in front of the kids, eat away and just ignore them and the idea is they realise that they should eat as well. Jason had quite a few things around him, some soup, some yoghurt and some bread. We had his pom-bar chips for later but hidden away to try and see if he will accept something else first. We tried him with cheese, grated that comes in a packet but he didn’t want that either. He then took to my coke but instead of drinking it, it was more fun to pour in the cup then back in the bottle, in the cup then back in the bottle. Then we gave him some pom-bar chips and he obviously took those but same thing, put them in his mouth and that was him, chip monk for hours. We only gave him two so hopefully he would swallow but no he wouldn’t.
Speech therapy also went pretty well. Elisabeth is really trying hard with him, it takes him FOREVER to get use to new people and new things and takes forever for him to trust!! The one way to distract him is to give him one of the therapy tools that has batteries in and he can turn it on and off, on and off and while he is playing with that Elisabeth is able to work with him a bit. She tried again with the finger tooth brush and also a syringe with water. She almost got into his mouth, managed maybe one squirt of water and then suddenly he clicked and realised that hang on a minute this is not so nice, I don’t want to drink or eat!! So that was the end of Speech, water thrown everywhere and big tantrums until we put him in the pram then he happily waved bye bye to Elisabeth and the two students – stubborn, really stubborn.
We then got Jason weighed, was 10.76 today. Both Ingrid and Elisabeth were worried about Jason’s hydration and said we should see the doctor about maybe having a blood test to check his electrolytes but when the doctor took a look at him she said he looked fine and no need to test.
We had a long chat with Professor Sheer. He is a man of a few words, doesn’t say much, more watches and observes. Anyway he said that he has watched Jason and said yes he is stubborn but he wants to eat, he understands why he is here, and that is for eating and he will eventually eat. He said some kids all of a sudden just start eating, others have gone to a restaurant with their parents then all of a sudden start stealing food off of their plates and start eating. He can’t say what Jason would do as they are all different but Jason needs to realise that with eating he will feel better and this will happen in time!! He also said that Bruce isn’t exactly a big guy so we can’t expect Jason to have a lot of weight either, he is built like his father.
Bruce managed to order two boxes of formula to keep us going for the next two weeks while we are here. Wasn’t so difficult, the pharmacy have ordered it for us. We were asked by one of the doctors to give the box back - the one that we were given yesterday. So once we have received our boxes we will replace the box we were given. Our formula did cause quite a stir in the hospital.
We are waiting on the airline decision. Everyone and everything is waiting on that decision, the doctors and therapists keep asking, we will need more money for accommodation, formula and daily living and we need to extend the accommodation. So hopefully we will have an answer soon so we can make arrangements for everything else. BUT mother-in-law will give a call to the travel agent tomorrow and hopefully we will have an answer and a date soon.
On Monday Professor Dunitz-Sheer will be back and we will be able to catch up and have a talk to her about everything and also the Gastroenterologist will be back soon as well and we can chat to her about all the results and things. We were at least hoping for something out of the tests but it seems everything is normal. I can’t understand why, the way Jason has such watery stools and battles with his nose always being blocked or runny. I can’t believe that he doesn’t have any allergies, it really confuses me.
During play picnic, both Bruce and I were able to sit in today as there was more space in the room. We took our sandwiches as we are instructed that we must eat in front of the kids, eat away and just ignore them and the idea is they realise that they should eat as well. Jason had quite a few things around him, some soup, some yoghurt and some bread. We had his pom-bar chips for later but hidden away to try and see if he will accept something else first. We tried him with cheese, grated that comes in a packet but he didn’t want that either. He then took to my coke but instead of drinking it, it was more fun to pour in the cup then back in the bottle, in the cup then back in the bottle. Then we gave him some pom-bar chips and he obviously took those but same thing, put them in his mouth and that was him, chip monk for hours. We only gave him two so hopefully he would swallow but no he wouldn’t.
Speech therapy also went pretty well. Elisabeth is really trying hard with him, it takes him FOREVER to get use to new people and new things and takes forever for him to trust!! The one way to distract him is to give him one of the therapy tools that has batteries in and he can turn it on and off, on and off and while he is playing with that Elisabeth is able to work with him a bit. She tried again with the finger tooth brush and also a syringe with water. She almost got into his mouth, managed maybe one squirt of water and then suddenly he clicked and realised that hang on a minute this is not so nice, I don’t want to drink or eat!! So that was the end of Speech, water thrown everywhere and big tantrums until we put him in the pram then he happily waved bye bye to Elisabeth and the two students – stubborn, really stubborn.
We then got Jason weighed, was 10.76 today. Both Ingrid and Elisabeth were worried about Jason’s hydration and said we should see the doctor about maybe having a blood test to check his electrolytes but when the doctor took a look at him she said he looked fine and no need to test.
We had a long chat with Professor Sheer. He is a man of a few words, doesn’t say much, more watches and observes. Anyway he said that he has watched Jason and said yes he is stubborn but he wants to eat, he understands why he is here, and that is for eating and he will eventually eat. He said some kids all of a sudden just start eating, others have gone to a restaurant with their parents then all of a sudden start stealing food off of their plates and start eating. He can’t say what Jason would do as they are all different but Jason needs to realise that with eating he will feel better and this will happen in time!! He also said that Bruce isn’t exactly a big guy so we can’t expect Jason to have a lot of weight either, he is built like his father.
Bruce managed to order two boxes of formula to keep us going for the next two weeks while we are here. Wasn’t so difficult, the pharmacy have ordered it for us. We were asked by one of the doctors to give the box back - the one that we were given yesterday. So once we have received our boxes we will replace the box we were given. Our formula did cause quite a stir in the hospital.
We are waiting on the airline decision. Everyone and everything is waiting on that decision, the doctors and therapists keep asking, we will need more money for accommodation, formula and daily living and we need to extend the accommodation. So hopefully we will have an answer soon so we can make arrangements for everything else. BUT mother-in-law will give a call to the travel agent tomorrow and hopefully we will have an answer and a date soon.
On Monday Professor Dunitz-Sheer will be back and we will be able to catch up and have a talk to her about everything and also the Gastroenterologist will be back soon as well and we can chat to her about all the results and things. We were at least hoping for something out of the tests but it seems everything is normal. I can’t understand why, the way Jason has such watery stools and battles with his nose always being blocked or runny. I can’t believe that he doesn’t have any allergies, it really confuses me.