Today we had no therapy on the cards, only play picnic at 12:00. We were pretty relieved to have a little break.
We decided to go and pay for our accommodation so we know that we have sorted that out and one less thing to do before we head on home. We are really going to miss the stunning forest walks and exercise we are getting here in Austria. The forest is absolutely beautiful, huge trees and absolutely stunning. Jason loves to run around the forest play amongst the trees. We don’t get to walk like this at home, but not long and summer will be back home when the sun goes down much later, it’s nice and hot and we will be able to do some beach promenade walks when Bruce gets home at 6pm. Especially holiday season is great and festive walking on the promenade with all the happy holiday makers braaing on their veranda’s and walking around without a stress in the world.
Play picnic went pretty much the same. We took the tuc biscuits and also these little chocolate biscuits and his usual water. Being a Saturday it was a pretty casual play picnic. Jason did his usual trick, stuffed his mouth until there was no room left with the little chocolate biscuits and that was him for 3 hours with chocolate biscuits in his mouth and running out until eventually he got so angry having the biscuits in he had a temper tantrum and eventually the last lot came out. He won’t swallow and he won’t spit them out. I seriously don’t know how he holds that in his mouth for so long.
We went to check out the “Castle” today, the 3 of us, Rob, Brene and Tayden. What a stunning place, a HUGE building with absolutely massive magnificent gardens. Inside the Castle is the history but everything is in German so we didn’t really know what the history was. Well worth the trip though!!
Jason was pretty weak again today. His weight is 10.74kgs today. We tried just the 500mls with nothing until about 15:00pm but he is seriously too weak to walk for too long. He keeps falling. It’s not nice to watch, he is so skinny, very weak, hasn’t pooed in 2 days which is SO unusual considering he has a chronic diarrhoea problem and also a dry nappy the whole day. So that tells us that he may be dehydrated if he is not weeing. He isn’t pooing obviously because everything he is taking in is being absorbed and used by his body.
We have decided that we are no longer going to starve him to eat. He has been starved for almost 5 weeks and starvation does nothing but make him weak, lethargic and he isn’t the same Jason that we came here with. He hardly talks, just sits there and not the same happy, healthy, energetic little Jason anymore. So we have decided that Jason needs his nutrition, it’s no good starving him if he is swallowing NOTHING orally. If he was putting food in his mouth and actually SWALLOWING, maybe it would be worth holding back a feed or two but he is far too weak to cut back his food so drastically. We know he is keen to eat and is willing to put things in his mouth but he will put food in his mouth even when he is being fed.
We need our old Jason back, the happy little boy that we left home with. We haven’t given up hope that one day he will eat and drink but it will be in Jason’s time, whether it is a couple of weeks, months or years, he will get there. We know Jason the best as his parents, we know how he operates, how much he can tolerate and when it is time to back off. He has been through so much the past 5 weeks. He knows he should eat and he will ONE DAY. But at this stage we need to get his strength and weight up again and his confidence and enjoyment of life.
We have learnt a whole lot while we have been here so we will take back huge amounts of knowledge and support from the doctors and therapists. We only have one more therapy day left before we leave. In the meantime we find the right therapists that can work on the areas that need working on and we try and lead a “normal” life, as normal as we can. We carry on encouraging Jason to eat and not forget everything that we have learnt the past 5 weeks.
We decided to go and pay for our accommodation so we know that we have sorted that out and one less thing to do before we head on home. We are really going to miss the stunning forest walks and exercise we are getting here in Austria. The forest is absolutely beautiful, huge trees and absolutely stunning. Jason loves to run around the forest play amongst the trees. We don’t get to walk like this at home, but not long and summer will be back home when the sun goes down much later, it’s nice and hot and we will be able to do some beach promenade walks when Bruce gets home at 6pm. Especially holiday season is great and festive walking on the promenade with all the happy holiday makers braaing on their veranda’s and walking around without a stress in the world.
Play picnic went pretty much the same. We took the tuc biscuits and also these little chocolate biscuits and his usual water. Being a Saturday it was a pretty casual play picnic. Jason did his usual trick, stuffed his mouth until there was no room left with the little chocolate biscuits and that was him for 3 hours with chocolate biscuits in his mouth and running out until eventually he got so angry having the biscuits in he had a temper tantrum and eventually the last lot came out. He won’t swallow and he won’t spit them out. I seriously don’t know how he holds that in his mouth for so long.
We went to check out the “Castle” today, the 3 of us, Rob, Brene and Tayden. What a stunning place, a HUGE building with absolutely massive magnificent gardens. Inside the Castle is the history but everything is in German so we didn’t really know what the history was. Well worth the trip though!!
Jason was pretty weak again today. His weight is 10.74kgs today. We tried just the 500mls with nothing until about 15:00pm but he is seriously too weak to walk for too long. He keeps falling. It’s not nice to watch, he is so skinny, very weak, hasn’t pooed in 2 days which is SO unusual considering he has a chronic diarrhoea problem and also a dry nappy the whole day. So that tells us that he may be dehydrated if he is not weeing. He isn’t pooing obviously because everything he is taking in is being absorbed and used by his body.
We have decided that we are no longer going to starve him to eat. He has been starved for almost 5 weeks and starvation does nothing but make him weak, lethargic and he isn’t the same Jason that we came here with. He hardly talks, just sits there and not the same happy, healthy, energetic little Jason anymore. So we have decided that Jason needs his nutrition, it’s no good starving him if he is swallowing NOTHING orally. If he was putting food in his mouth and actually SWALLOWING, maybe it would be worth holding back a feed or two but he is far too weak to cut back his food so drastically. We know he is keen to eat and is willing to put things in his mouth but he will put food in his mouth even when he is being fed.
We need our old Jason back, the happy little boy that we left home with. We haven’t given up hope that one day he will eat and drink but it will be in Jason’s time, whether it is a couple of weeks, months or years, he will get there. We know Jason the best as his parents, we know how he operates, how much he can tolerate and when it is time to back off. He has been through so much the past 5 weeks. He knows he should eat and he will ONE DAY. But at this stage we need to get his strength and weight up again and his confidence and enjoyment of life.
We have learnt a whole lot while we have been here so we will take back huge amounts of knowledge and support from the doctors and therapists. We only have one more therapy day left before we leave. In the meantime we find the right therapists that can work on the areas that need working on and we try and lead a “normal” life, as normal as we can. We carry on encouraging Jason to eat and not forget everything that we have learnt the past 5 weeks.