Oh my goodness today was a total disaster day. We had quite a few therapy sessions booked, the first one starting at 8:30. Before we even left the B&B Jason was screaming while we went out the door and down the road. Eva was our first therapy. She did her cranio therapy again and he just screamed and screamed and screamed for about half an hour. Eva wasn’t holding him back or anything, he could leave whenever he wanted but it took him a good half an hour to decide to move.
Next therapy was speech therapy with Elisabeth. He got into the room and straight away started crying. It took him quite a while to calm down but eventually he did calm down and Elisabeth was able to work with him. She managed to work around his face and mouth and managed to get some syringes of water in but still he will hold the water in his mouth and not swallow or spit out.
Psychotherapy was due to be next but because things haven’t changed, there was not much more to talk about with Silvia, what do we say, there was nothing more to say so we decided to skip that session.
We then called the doctor to listen to Jason’s chest. He is still very loud and we felt like he needed physio, nebbing and an antibiotic. The doctor listened to his chest and said that he would discuss it with Professor Dunitz. I then showed Jason this plastic rocking toy and oh my word, he ran at it and started hitting it and threw himself on the floor. I guess he thought I was telling him what to do and he didn’t want to get on it and that was his way of telling us that he does not want to.
Oh my word play picnic was an absolute disaster!!!! The worst play picnic ever!! We got into the room nice and calmly but all of a sudden Jason threw an absolute tantrum like we have never seen him throw. He threw himself on the floor, I tried to pick him up and again he threw himself down. I tried to just hold him and he was kicking and carrying on. I tried to give him a magazine and he threw that to the other side of the room. He tried to totally destroy the room, was trying to lift the sheet with all the food to throw everything upside down. I really tried my best hoping that he would calm down but there was no calming him. I was totally embarrassed and the episode really made me angry. Bruce came to save the day and took him outside for a walk to calm him down because we were due to have music after.
Well we decided after that episode that music was a no-no. I spoke to the music teacher a bit because she watched the whole tantrum and she said what Jason is doing is pretty normal, they often have kids do this. What Jason is telling us is enough is enough!! He had so many therapies today, so much screaming and he was telling us that there was NO ways he was going to do play picnic.
We also spoke to the professor about it and she said that he is angry, he is hungry and this is pretty normal. We also asked about his chest and she said that the doctor didn’t think his chest was that bad to need any medicine and we must continue with the sprays. I really do miss my stethoscope and nebulizer. I know with my nebulizer that would clear Jason in no time. It’s hard relying on other doctors. Normally at home I first listen to his chest, when I know it’s bad, we go to physio and I nebulise every 4 hours and that normally sorts him out. These sprays really aren’t working, we have to put this chamber over his face 4 times a day and it really traumatises him and us!! Whenever we go near him, it’s always to hold him down to get the sprays done.
Bruce and I were in total shock, we have never seen Jason like this, he is normally so placid, so calm and so happy. BUT given what he has been through the past 4 weeks, you can’t blame him, he is telling us that he doesn’t want this and can’t handle this anymore.
In the afternoon we decided to just go back to the B&B and relax a little. The first time we have seen Jason happy and smiling. We were playing with the xylophone that we bought him, he was drawing, we played some play dough, tickled him and had some fun family time together. It was nice to see the old Jason again.
This really kills us to see Jason like this and to watch him go through this, it is really hard.
Next therapy was speech therapy with Elisabeth. He got into the room and straight away started crying. It took him quite a while to calm down but eventually he did calm down and Elisabeth was able to work with him. She managed to work around his face and mouth and managed to get some syringes of water in but still he will hold the water in his mouth and not swallow or spit out.
Psychotherapy was due to be next but because things haven’t changed, there was not much more to talk about with Silvia, what do we say, there was nothing more to say so we decided to skip that session.
We then called the doctor to listen to Jason’s chest. He is still very loud and we felt like he needed physio, nebbing and an antibiotic. The doctor listened to his chest and said that he would discuss it with Professor Dunitz. I then showed Jason this plastic rocking toy and oh my word, he ran at it and started hitting it and threw himself on the floor. I guess he thought I was telling him what to do and he didn’t want to get on it and that was his way of telling us that he does not want to.
Oh my word play picnic was an absolute disaster!!!! The worst play picnic ever!! We got into the room nice and calmly but all of a sudden Jason threw an absolute tantrum like we have never seen him throw. He threw himself on the floor, I tried to pick him up and again he threw himself down. I tried to just hold him and he was kicking and carrying on. I tried to give him a magazine and he threw that to the other side of the room. He tried to totally destroy the room, was trying to lift the sheet with all the food to throw everything upside down. I really tried my best hoping that he would calm down but there was no calming him. I was totally embarrassed and the episode really made me angry. Bruce came to save the day and took him outside for a walk to calm him down because we were due to have music after.
Well we decided after that episode that music was a no-no. I spoke to the music teacher a bit because she watched the whole tantrum and she said what Jason is doing is pretty normal, they often have kids do this. What Jason is telling us is enough is enough!! He had so many therapies today, so much screaming and he was telling us that there was NO ways he was going to do play picnic.
We also spoke to the professor about it and she said that he is angry, he is hungry and this is pretty normal. We also asked about his chest and she said that the doctor didn’t think his chest was that bad to need any medicine and we must continue with the sprays. I really do miss my stethoscope and nebulizer. I know with my nebulizer that would clear Jason in no time. It’s hard relying on other doctors. Normally at home I first listen to his chest, when I know it’s bad, we go to physio and I nebulise every 4 hours and that normally sorts him out. These sprays really aren’t working, we have to put this chamber over his face 4 times a day and it really traumatises him and us!! Whenever we go near him, it’s always to hold him down to get the sprays done.
Bruce and I were in total shock, we have never seen Jason like this, he is normally so placid, so calm and so happy. BUT given what he has been through the past 4 weeks, you can’t blame him, he is telling us that he doesn’t want this and can’t handle this anymore.
In the afternoon we decided to just go back to the B&B and relax a little. The first time we have seen Jason happy and smiling. We were playing with the xylophone that we bought him, he was drawing, we played some play dough, tickled him and had some fun family time together. It was nice to see the old Jason again.
This really kills us to see Jason like this and to watch him go through this, it is really hard.