Last night Jason sounded wheezy. We couldn’t decide whether it was his chest or his nose but he has had a blocked nose for ages, the same at home, always has problems of breathing through his nose. This is why I can’t understand that he has no allergies? I did the usual, rubbed vicks on his chest, gave him all his nose sprays and just prayed before I went to bed.
He still woke up pretty noisy but it appears to be his nose. I miss my stethoscope!! His whole body vibrates and it sounds like the chest but I am sure it is his nose because he is the worst in the morning and at night.
Today we had occupational therapy with Ingrid which was pretty successful. Jason was in a better mood today and she was able to really work with him. Took him a few trust issues but he eventually realised that she wasn’t there to hurt him. They play games together, swinging on the swing and trying to grab things, putting bean bags and balls into a pipe, playing with play dough and sticking that on the mirror and fishing out stones from lentals. He even got into the lental bath. Ingrid can’t believe us when we tell her that Jason is EXTREMELY active at home. Those of you that know Jason well can confirm this, he doesn’t stop, is a real busy body. She said she can’t imagine him so busy and full of energy because she has only seen him sitting and basically staring. This is obviously from the hunger, you can hear his tummy throughout the day grumbling LOUDLY. She also can’t imagine that he loves water and sand like he does. But anyway Jason is a TOTALLY different child here.
We had Elisabeth after, which started with Jason throwing himself on the floor before we even started. Bruce and I sat in for a little while but he was so moody and we decided maybe he would be better if Bruce and I left the room so we left the room. We waited outside and to our surprise all was quiet until about 5 minutes before it was time to end. Obviously the water came out and he didn’t like that!
Play picnic was pretty uneventful we tried putting a whole lot of different bowls around him and hid the Pom-bar chips. He didn’t take to anything, wasn’t interested then he found the Pom-bar chips behind Bruce’s back.
We need to find the right medium with Jason. He needs to have the right amount of liquid for him to be able to partake in therapy and play picnic but at the same time not too much that he won’t want to eat or drink. The problem we have been having is that with too little formula/liquids he just sits there like a vegetable and stares into space without any energy whatsoever. Today was better because we gave him some water this morning and the change was amazing.
Jason is definitely EXTREMELY stubborn. I don’t know where he gets that from? Definitely not his mother!! We are in a battle, it’s Jason against us and the therapists and Jason is flippen good!! BUT he will NOT win this battle, he will have to give in. It’s a fine line, he doesn’t have any weight to play with. If he was 13kgs this battle would be a whole lot easier but he doesn’t have much weight and is very lethargic without his formula.
We would like to have a meeting hopefully early next week with Professor Dunitz-sheer, Eva, Elisabeth and Ingrid, everyone that is involved with Jason’s treatment. It would be good to get some direction as to where to from here and how are things progressing.
Great news is our flights have been changed. Thanks to SAA, Lufthansa and Rayanne our travel agent from Rennies Travel for all her hard work in changing our flights. The airlines have very kindly waived their penalty fees.
He still woke up pretty noisy but it appears to be his nose. I miss my stethoscope!! His whole body vibrates and it sounds like the chest but I am sure it is his nose because he is the worst in the morning and at night.
Today we had occupational therapy with Ingrid which was pretty successful. Jason was in a better mood today and she was able to really work with him. Took him a few trust issues but he eventually realised that she wasn’t there to hurt him. They play games together, swinging on the swing and trying to grab things, putting bean bags and balls into a pipe, playing with play dough and sticking that on the mirror and fishing out stones from lentals. He even got into the lental bath. Ingrid can’t believe us when we tell her that Jason is EXTREMELY active at home. Those of you that know Jason well can confirm this, he doesn’t stop, is a real busy body. She said she can’t imagine him so busy and full of energy because she has only seen him sitting and basically staring. This is obviously from the hunger, you can hear his tummy throughout the day grumbling LOUDLY. She also can’t imagine that he loves water and sand like he does. But anyway Jason is a TOTALLY different child here.
We had Elisabeth after, which started with Jason throwing himself on the floor before we even started. Bruce and I sat in for a little while but he was so moody and we decided maybe he would be better if Bruce and I left the room so we left the room. We waited outside and to our surprise all was quiet until about 5 minutes before it was time to end. Obviously the water came out and he didn’t like that!
Play picnic was pretty uneventful we tried putting a whole lot of different bowls around him and hid the Pom-bar chips. He didn’t take to anything, wasn’t interested then he found the Pom-bar chips behind Bruce’s back.
We need to find the right medium with Jason. He needs to have the right amount of liquid for him to be able to partake in therapy and play picnic but at the same time not too much that he won’t want to eat or drink. The problem we have been having is that with too little formula/liquids he just sits there like a vegetable and stares into space without any energy whatsoever. Today was better because we gave him some water this morning and the change was amazing.
Jason is definitely EXTREMELY stubborn. I don’t know where he gets that from? Definitely not his mother!! We are in a battle, it’s Jason against us and the therapists and Jason is flippen good!! BUT he will NOT win this battle, he will have to give in. It’s a fine line, he doesn’t have any weight to play with. If he was 13kgs this battle would be a whole lot easier but he doesn’t have much weight and is very lethargic without his formula.
We would like to have a meeting hopefully early next week with Professor Dunitz-sheer, Eva, Elisabeth and Ingrid, everyone that is involved with Jason’s treatment. It would be good to get some direction as to where to from here and how are things progressing.
Great news is our flights have been changed. Thanks to SAA, Lufthansa and Rayanne our travel agent from Rennies Travel for all her hard work in changing our flights. The airlines have very kindly waived their penalty fees.