Today was a good day, turned out much better than expected. This blog is beginning to sound like a real soapie!! I hope you are all tuning in even though the episodes don’t exactly air on time. You have to be pretty patient to tune into the next instalment!
First thing this morning we got a call from the hospital to let us know that the psychologist wanted to see us at 10:00. I couldn’t understand this because Silvia, the psychologist was already on our schedule for 10:00.
We were running a little late this morning, our first appointment was at 9:00. I mistakenly thought it was Monday and set my alarm late and took my time getting ready, then Bruce pointed out that it was actually Tuesday. The busses come at certain intervals, pretty quickly but our appointment was 9:00 and we only left out the door at 8:51 and the bus was due at 8:55. The 3 of us raced down the LONG road, those of you that have been here know what it’s like. Bruce and I sprinting with me pushing Jason in the pram. Jason thought it was a great game, never been that fast in his pram!! We made the bus with about a minute spare!
Before we even got into the hospital we walked past Professor Dunitz who was driving in her car. We waved to her and she called out “Mr Long, Mr Long, the psychologist would like to see you at 10:00”.
Our fist session was with Eva, she wanted to do some cranio therapy. It sounds strange but it really, really does work. She just holds Jason, touches him without any force and suddenly he started crying and carrying on. For those of you that have seen the DVD you will know what I am talking about. Anyway she just touches his back or his tummy without any force and without holding him back. She said that the screaming and crying is Jason’s way of getting rid of his frustration and he needs to get that off his chest, it’s bad to hold thing in, rather rant or rave and get rid of the anger. I am pretty good at that, I am the moaner, the talker, the screamer and it does feel good whereas Bruce holds his feelings in. Everyone deals with their emotions differently. So the session went really well, Eva worked her magic on Jason, managed to clear his throat and chest pretty nicely.
Our second session was with Silvia the psychologist – poor Silvia, what this poor woman has been through with the 3 of us!! This is one session Jason LOVES. He knows Silvia doesn’t touch him and is safe and happy to listen to mommy and daddy chat to Silvia all about “The Days of our Lives”. Silvia is wonderful, she has been with us from day 1, seen Jason at his worst state vomiting every 2 minutes when he had rotavirus, watched how we had to go through Jason going through another anaesthetic procedure, watched how he got his sinus/throat/ear infection and now hearing about this latest infection! She is really wonderful, it’s good for Bruce and I to chat to her and discuss how we are feeling, how we are coping and managing. I guess we have made her job a little more interesting because not every family comes for tube weaning and has to go through 4 weeks of pure hell! So ja we know each other very well by now.
Our third session was with Elisabeth the speech therapist. She said again she would work with Jason on her own and see how it goes so Bruce and myself had about 45 mins spare to check emails and things. When we got back, not a peep coming from the room. Normally there is loud screams from Jason. Then suddenly Christian (one of the students) opened the door and said that we could come in and they were finished. There was Jason sitting on Elisabeth’s lap as happy as can be waving hello to us. She said the session went really well. She started in her usual slow way of getting him to trust her by playing with stickers then progressing to water, water on the fingers, on his arm, eventually to his mouth with the syringe. She managed to get 4 x 5mls syringes into his mouth without any screaming and carrying on. So excellent session. She did say that Jason also tends to store his water/liquids in his mouth the same as he does with the chips. He somehow stores it instead of swallowing and she think this is the same with the mucous and spit and this is the noises in his “nose” that I have been asking about for years. He stores it at the back of his throat instead of swallowing. With Jason today she lay him down a bit while giving the water otherwise it just comes out instead of swallowing. She did say about 10mls came back out so all in all 50% went down.
While we were out and about on the 5th floor checking emails we bumped into one of the therapists who was told by Professor Dunitz that the psychologist wanted to see us. She obviously didn’t know we had seen Silvia already but it seems like after yesterday’s events everyone is concerned about us and concerned about the fact that we may have gone home early and obviously felt that we needed a psychologist. Quite funny indeed!
We were due to have a meeting with Professor Dunitz so we gave Jason some milk before she came and got him weighed. His weight today was 10.95kgs. After waiting a few mins, she came up the corridor from the play picnic room and said how is Jason, how is his stools? So we said he hadn’t done a poo for ages and she said “great, play picnic time” So yay we managed another play picnic today. I went in with Jason and Brene and Tayden sat with us. Jason didn’t eat anything, not even pom-baer’s but he had had 100mls of formula via his mic-key before so he was probably full. Eva made a very good point today. She has been observing Jason the past few weeks and she said with Jason he wants to do everything on his own, he wants to eat on his own terms and doesn’t want us to give him the food, and he will take when he wants. To prove the point she gave myself, Tayden, Brene and herself a chocolate umbrella and left one on her lap for Jason and true’s Bob Jason took it from her lap!! Didn’t eat it but he wanted one for himself because we all had one and not him!!
This afternoon we all had a free afternoon so Rob, Brene, Tayden, Bruce, myself and Jason went into town to do some exploring and to get out while the sun is shining. We tried going to McDonalds but there were no spare tables so we ended up going back to the Asian restaurant for Chinese buffet and we all ate ourselves stupid. Jason wasn’t feeling very lekka and was pretty tired so after lunch, which by then was about 15:30 we left Rob, Brene and Tayden and headed back to our B&B.
We still don’t know how his chest is going. He sounds worse at night and mornings but sometimes his nose sounds like his chest. This morning he sounded much better than yesterday though.
Jason has learnt a hell of a lot while we have been here and we have learnt a tremendous amount of knowledge. We now know how Jason operates, we know what to do, we know what not to do. We won’t be going home with an eating child at this stage, but we will definitely be going home with a child that is interested in eating and knows what eating is all about. So our trip hasn’t been in vain, we have gained SO MUCH KNOWLEDGE.
Jason is back to his old happy self, no longer like a vegetable state, he is almost back to normal J and it has been hectic for him. It’s great to have a happy Jason now.
The great thing is that because we have been here we have gained the knowledge, know what to do and we will be able to continue with net coaching and the beauty of it is the therapists and the professor have seen how Jason operates and they and we have seen that Jason does not eat when he is starving, he has to be satisfied and will eat.
So our spirits are up today. Definite a roller coaster ride of emotions going on here. We don’t know what is going to happen from one minute to the next. “Like sand through the hour glass, these are the Days of our Lives”!!
Oh and guess what the goats are back, we didn’t kill them, thank goodness. The must have been punished or had a trip to the vet, who knows, but today they came dashing over to us begging us again for some food and we had to turn deaf ears and ignore them!!
We are now on operation find braai grid to have a good old South African braai in Austria. We are determined to braai before we leave. Rob, Brene, Tayden and the 3 of us want a braai and will do anything to have one. So the options so far are..... there are no braai’s, grids or charcoal to be seen in Austria, the only one is the nut stand outside Billa the local shop so we would have to wait for the nut man to pack up and hit him over the head and steal his braai otherwise option 2 is to dig a hole at the B&B, ask gogo who doesn’t speak a word of English if we can borrow the oven grid and braai with that? Because she doesn’t understand us, using the grid shouldn’t be a problem!!
First thing this morning we got a call from the hospital to let us know that the psychologist wanted to see us at 10:00. I couldn’t understand this because Silvia, the psychologist was already on our schedule for 10:00.
We were running a little late this morning, our first appointment was at 9:00. I mistakenly thought it was Monday and set my alarm late and took my time getting ready, then Bruce pointed out that it was actually Tuesday. The busses come at certain intervals, pretty quickly but our appointment was 9:00 and we only left out the door at 8:51 and the bus was due at 8:55. The 3 of us raced down the LONG road, those of you that have been here know what it’s like. Bruce and I sprinting with me pushing Jason in the pram. Jason thought it was a great game, never been that fast in his pram!! We made the bus with about a minute spare!
Before we even got into the hospital we walked past Professor Dunitz who was driving in her car. We waved to her and she called out “Mr Long, Mr Long, the psychologist would like to see you at 10:00”.
Our fist session was with Eva, she wanted to do some cranio therapy. It sounds strange but it really, really does work. She just holds Jason, touches him without any force and suddenly he started crying and carrying on. For those of you that have seen the DVD you will know what I am talking about. Anyway she just touches his back or his tummy without any force and without holding him back. She said that the screaming and crying is Jason’s way of getting rid of his frustration and he needs to get that off his chest, it’s bad to hold thing in, rather rant or rave and get rid of the anger. I am pretty good at that, I am the moaner, the talker, the screamer and it does feel good whereas Bruce holds his feelings in. Everyone deals with their emotions differently. So the session went really well, Eva worked her magic on Jason, managed to clear his throat and chest pretty nicely.
Our second session was with Silvia the psychologist – poor Silvia, what this poor woman has been through with the 3 of us!! This is one session Jason LOVES. He knows Silvia doesn’t touch him and is safe and happy to listen to mommy and daddy chat to Silvia all about “The Days of our Lives”. Silvia is wonderful, she has been with us from day 1, seen Jason at his worst state vomiting every 2 minutes when he had rotavirus, watched how we had to go through Jason going through another anaesthetic procedure, watched how he got his sinus/throat/ear infection and now hearing about this latest infection! She is really wonderful, it’s good for Bruce and I to chat to her and discuss how we are feeling, how we are coping and managing. I guess we have made her job a little more interesting because not every family comes for tube weaning and has to go through 4 weeks of pure hell! So ja we know each other very well by now.
Our third session was with Elisabeth the speech therapist. She said again she would work with Jason on her own and see how it goes so Bruce and myself had about 45 mins spare to check emails and things. When we got back, not a peep coming from the room. Normally there is loud screams from Jason. Then suddenly Christian (one of the students) opened the door and said that we could come in and they were finished. There was Jason sitting on Elisabeth’s lap as happy as can be waving hello to us. She said the session went really well. She started in her usual slow way of getting him to trust her by playing with stickers then progressing to water, water on the fingers, on his arm, eventually to his mouth with the syringe. She managed to get 4 x 5mls syringes into his mouth without any screaming and carrying on. So excellent session. She did say that Jason also tends to store his water/liquids in his mouth the same as he does with the chips. He somehow stores it instead of swallowing and she think this is the same with the mucous and spit and this is the noises in his “nose” that I have been asking about for years. He stores it at the back of his throat instead of swallowing. With Jason today she lay him down a bit while giving the water otherwise it just comes out instead of swallowing. She did say about 10mls came back out so all in all 50% went down.
While we were out and about on the 5th floor checking emails we bumped into one of the therapists who was told by Professor Dunitz that the psychologist wanted to see us. She obviously didn’t know we had seen Silvia already but it seems like after yesterday’s events everyone is concerned about us and concerned about the fact that we may have gone home early and obviously felt that we needed a psychologist. Quite funny indeed!
We were due to have a meeting with Professor Dunitz so we gave Jason some milk before she came and got him weighed. His weight today was 10.95kgs. After waiting a few mins, she came up the corridor from the play picnic room and said how is Jason, how is his stools? So we said he hadn’t done a poo for ages and she said “great, play picnic time” So yay we managed another play picnic today. I went in with Jason and Brene and Tayden sat with us. Jason didn’t eat anything, not even pom-baer’s but he had had 100mls of formula via his mic-key before so he was probably full. Eva made a very good point today. She has been observing Jason the past few weeks and she said with Jason he wants to do everything on his own, he wants to eat on his own terms and doesn’t want us to give him the food, and he will take when he wants. To prove the point she gave myself, Tayden, Brene and herself a chocolate umbrella and left one on her lap for Jason and true’s Bob Jason took it from her lap!! Didn’t eat it but he wanted one for himself because we all had one and not him!!
This afternoon we all had a free afternoon so Rob, Brene, Tayden, Bruce, myself and Jason went into town to do some exploring and to get out while the sun is shining. We tried going to McDonalds but there were no spare tables so we ended up going back to the Asian restaurant for Chinese buffet and we all ate ourselves stupid. Jason wasn’t feeling very lekka and was pretty tired so after lunch, which by then was about 15:30 we left Rob, Brene and Tayden and headed back to our B&B.
We still don’t know how his chest is going. He sounds worse at night and mornings but sometimes his nose sounds like his chest. This morning he sounded much better than yesterday though.
Jason has learnt a hell of a lot while we have been here and we have learnt a tremendous amount of knowledge. We now know how Jason operates, we know what to do, we know what not to do. We won’t be going home with an eating child at this stage, but we will definitely be going home with a child that is interested in eating and knows what eating is all about. So our trip hasn’t been in vain, we have gained SO MUCH KNOWLEDGE.
Jason is back to his old happy self, no longer like a vegetable state, he is almost back to normal J and it has been hectic for him. It’s great to have a happy Jason now.
The great thing is that because we have been here we have gained the knowledge, know what to do and we will be able to continue with net coaching and the beauty of it is the therapists and the professor have seen how Jason operates and they and we have seen that Jason does not eat when he is starving, he has to be satisfied and will eat.
So our spirits are up today. Definite a roller coaster ride of emotions going on here. We don’t know what is going to happen from one minute to the next. “Like sand through the hour glass, these are the Days of our Lives”!!
Oh and guess what the goats are back, we didn’t kill them, thank goodness. The must have been punished or had a trip to the vet, who knows, but today they came dashing over to us begging us again for some food and we had to turn deaf ears and ignore them!!
We are now on operation find braai grid to have a good old South African braai in Austria. We are determined to braai before we leave. Rob, Brene, Tayden and the 3 of us want a braai and will do anything to have one. So the options so far are..... there are no braai’s, grids or charcoal to be seen in Austria, the only one is the nut stand outside Billa the local shop so we would have to wait for the nut man to pack up and hit him over the head and steal his braai otherwise option 2 is to dig a hole at the B&B, ask gogo who doesn’t speak a word of English if we can borrow the oven grid and braai with that? Because she doesn’t understand us, using the grid shouldn’t be a problem!!