I would say today was a good day, we at least got some positive therapy in today and made play picnic. First thing this morning we met with Eva for our physiotherapy session. Jason again filled his mouth with Pum-Bar chips, one after the other, as much as he could fit in. He chews them and stores them. Everyone says this is a positive thing, the fact that he is willing to put them in his mouth is great and a first step. The next step would have to be chewing and swallowing and this will come with time.
After physiotherapy we had Music with Brigit. This was our first music session so we were quite curious as to what music was all about and how Jason would react to it. Well it went very well, he was very curious. Brigit sang some songs with her guitar while we played the drums. Jason thought drumming was great and was very interested in all the musical instruments and I would say enjoyed it. The hardest part about music was having to finish the session and take the drum away from him. He must take after his grandfather who was a drummer in a band called “The Ravons” in his youth!! Daddy will have to buy you some drums when we get home my boy!
After music we had occupational therapy with Ingrid. Also out first session of OT. Jason took some time getting use to the new surroundings and new things around him like he does with everything. Ingrid the OT is lovely, very patient and knows what she is doing. Jason did quite a bit of crying during the session and she was fine with it, happy to try and help and happy to have Jason’s second hand chips on her swing and mats. We had quite a bit of crying but eventually he warmed up to OT and did a little as he was told.
After OT we had speech therapy with Elisabeth. She is lovely, knows Jason pretty well, knows how he operates and knows how to handle him. By the time it was speech therapy he was really buggered, really tired and not too much energy or power in him. I guess this did help because Elisabeth was able to really work in his facial region and work on desensitising his mouth. She does this by using her finger or a wet cloth and gently strokes his cheeks to try and get into that mouth of his.
Play picnic was pretty uneventful, he was exhausted by play picnic and just watched everything going on not interested in getting up or trying to eat anything. He was just too tired.
After speaking with Eva we decided that Jason should only have the therapy necessary that will help him with his eating and to cut out all the unnecessary therapy. Too much therapy and events for one day just tires him out and by the time play picnic comes he is buggered and very moody and not interested in eating or drinking.
A wonderful thing happened to us tonight. At 6pm we decided to start Jason’s milk seen as though he was asleep already only to find out that the last 500ml we had was in fact an old one that had been opened days before and not thrown out so we had no formula for tonight. Again Eva to the rescue, she managed to help us out again by phoning the hospital and arranging formula for tonight. Of course Jason isn’t on your every day formula, he has to be on one of the formulas that you have to especially order in so tonight we are trying a new formula that had to be specially cooked for Jason. So off Bruce went in the pitch dark, cold Austria to go and get the formula. Obviously I felt like such an idiot and for goodness sake why does everything have to go wrong in our lives. Bruce took about an hour and was back with the formula to save the day. Poor Bruce ended up walking the whole way there and the whole way back. No busses around or at least a few of them. One did drive past him though. Gosh our luck isn’t the best.
Jason has lost quite a bit of weight 10.72 today so over a kilo. It upsets us when we change his nappy or bath him. We need him to start eating now. It’s a vicious cycle, give him more formula and he will gain weight but won’t eat. Reduce his formula and he may show more interest in eating. BUT we are here to tube wean Jason and unfortunately with starvation comes hunger and the need to eat so we have to just hang in here and hopefully things will change for the better. I hope so, I really hope so!!
After physiotherapy we had Music with Brigit. This was our first music session so we were quite curious as to what music was all about and how Jason would react to it. Well it went very well, he was very curious. Brigit sang some songs with her guitar while we played the drums. Jason thought drumming was great and was very interested in all the musical instruments and I would say enjoyed it. The hardest part about music was having to finish the session and take the drum away from him. He must take after his grandfather who was a drummer in a band called “The Ravons” in his youth!! Daddy will have to buy you some drums when we get home my boy!
After music we had occupational therapy with Ingrid. Also out first session of OT. Jason took some time getting use to the new surroundings and new things around him like he does with everything. Ingrid the OT is lovely, very patient and knows what she is doing. Jason did quite a bit of crying during the session and she was fine with it, happy to try and help and happy to have Jason’s second hand chips on her swing and mats. We had quite a bit of crying but eventually he warmed up to OT and did a little as he was told.
After OT we had speech therapy with Elisabeth. She is lovely, knows Jason pretty well, knows how he operates and knows how to handle him. By the time it was speech therapy he was really buggered, really tired and not too much energy or power in him. I guess this did help because Elisabeth was able to really work in his facial region and work on desensitising his mouth. She does this by using her finger or a wet cloth and gently strokes his cheeks to try and get into that mouth of his.
Play picnic was pretty uneventful, he was exhausted by play picnic and just watched everything going on not interested in getting up or trying to eat anything. He was just too tired.
After speaking with Eva we decided that Jason should only have the therapy necessary that will help him with his eating and to cut out all the unnecessary therapy. Too much therapy and events for one day just tires him out and by the time play picnic comes he is buggered and very moody and not interested in eating or drinking.
A wonderful thing happened to us tonight. At 6pm we decided to start Jason’s milk seen as though he was asleep already only to find out that the last 500ml we had was in fact an old one that had been opened days before and not thrown out so we had no formula for tonight. Again Eva to the rescue, she managed to help us out again by phoning the hospital and arranging formula for tonight. Of course Jason isn’t on your every day formula, he has to be on one of the formulas that you have to especially order in so tonight we are trying a new formula that had to be specially cooked for Jason. So off Bruce went in the pitch dark, cold Austria to go and get the formula. Obviously I felt like such an idiot and for goodness sake why does everything have to go wrong in our lives. Bruce took about an hour and was back with the formula to save the day. Poor Bruce ended up walking the whole way there and the whole way back. No busses around or at least a few of them. One did drive past him though. Gosh our luck isn’t the best.
Jason has lost quite a bit of weight 10.72 today so over a kilo. It upsets us when we change his nappy or bath him. We need him to start eating now. It’s a vicious cycle, give him more formula and he will gain weight but won’t eat. Reduce his formula and he may show more interest in eating. BUT we are here to tube wean Jason and unfortunately with starvation comes hunger and the need to eat so we have to just hang in here and hopefully things will change for the better. I hope so, I really hope so!!