I got an interesting call from Jason's neurologist's rooms yesterday to say that he wanted to see us regarding the bloods taken on the 5th August.
So today we went to the appointment looking forward to something!! And a great appointment it was. It turns out that Jason's platelets are a little high and he was concerned about that because when platelets get too high your blood can clot so he has given medicine to solve that problem.
He examined Jason thoroughly, checked his weight, height and measurements. FINALLY to our HUGE delight it turns out that Jason has hit the growth chart!! Whoo hoo. So the neuro was VERY pleased with that.
Anyway yesterday knowing that we had the appointment today I emailed the link of the video of Jason gagging to him. We discussed Jason in huge detail and discussed the tests and our trip to Austria.
I then decided to feed Jason for the neuro to see Jason gagging in action and true's Bob Jason decided after 3 weeks of gagging this feed was not a good time for gagging. So nope the neuro didn't see him gagging but he did hear and see the 3 poos that Jason did in the hour and a half appointment. After the feed he also listened to his tummy for the second time with the stethoscope.
So the neuro said that Jason's tummy is making HUGE noises after a feed and he feels that his body is in overdrive and is working WAY too fast contracting and causing him to either gag/vomit or poo or all three and we need to slow this down. We have got medicine that we need to try out and see how that goes. He also wanted to know when Jason's last barium was and also when his last scope was.
So we have some progress. He is happy for us to go to Austria. He said that the genetic tests that he wanted done cannot be done in South Africa because the genetics department in Joburg don't have access to that sort of technology and at least in Austria we can have these things checked out. He also wants us to speak to the gastroenterologist there - we don't have a paediatric one in Durban either. And then obviously the eating as well. He isn't keen for us to remove the mic-key in Austria, which is fine with us because we aren't keen to remove it until we feel Jason is ready for it to be removed anyway.
So all in all a great day. I even managed to pop into work for an hour and a half with Jason and without gagging.
Last night Jason's bed was fed for an hour or two. The extension tube came out and the pump fed his bed. Thank goodness Jason wasn't wet and full of milk because he would have woken up gagging. So there I was putting a load of washing on at 12pm.
Let's see what tomorrow brings. Hopefully a good nights sleep and maybe, just maybe if we are lucky a morning at school for Jason and a morning at work for me - PLEASE!!
So today we went to the appointment looking forward to something!! And a great appointment it was. It turns out that Jason's platelets are a little high and he was concerned about that because when platelets get too high your blood can clot so he has given medicine to solve that problem.
He examined Jason thoroughly, checked his weight, height and measurements. FINALLY to our HUGE delight it turns out that Jason has hit the growth chart!! Whoo hoo. So the neuro was VERY pleased with that.
Anyway yesterday knowing that we had the appointment today I emailed the link of the video of Jason gagging to him. We discussed Jason in huge detail and discussed the tests and our trip to Austria.
I then decided to feed Jason for the neuro to see Jason gagging in action and true's Bob Jason decided after 3 weeks of gagging this feed was not a good time for gagging. So nope the neuro didn't see him gagging but he did hear and see the 3 poos that Jason did in the hour and a half appointment. After the feed he also listened to his tummy for the second time with the stethoscope.
So the neuro said that Jason's tummy is making HUGE noises after a feed and he feels that his body is in overdrive and is working WAY too fast contracting and causing him to either gag/vomit or poo or all three and we need to slow this down. We have got medicine that we need to try out and see how that goes. He also wanted to know when Jason's last barium was and also when his last scope was.
So we have some progress. He is happy for us to go to Austria. He said that the genetic tests that he wanted done cannot be done in South Africa because the genetics department in Joburg don't have access to that sort of technology and at least in Austria we can have these things checked out. He also wants us to speak to the gastroenterologist there - we don't have a paediatric one in Durban either. And then obviously the eating as well. He isn't keen for us to remove the mic-key in Austria, which is fine with us because we aren't keen to remove it until we feel Jason is ready for it to be removed anyway.
So all in all a great day. I even managed to pop into work for an hour and a half with Jason and without gagging.
Last night Jason's bed was fed for an hour or two. The extension tube came out and the pump fed his bed. Thank goodness Jason wasn't wet and full of milk because he would have woken up gagging. So there I was putting a load of washing on at 12pm.
Let's see what tomorrow brings. Hopefully a good nights sleep and maybe, just maybe if we are lucky a morning at school for Jason and a morning at work for me - PLEASE!!