Our big problem at the moment is he isn't interested in food. Since he got sick he has gone off food. I know what you guys are all thinking, we all go off our food when we are sick but seriously he isn't interested! I have tried leaving biscuits and things lying around and he just throws them in anger. At school I send him off with his lunch boxes and Jeanette says the same thing, he is not interested. He just crushes the biscuits. Drinking wise he is still putting his sippy cups to his lips and doing LOTS of pretend drinking. Particularly in the bath he pretend drinks a lot. I don't think he actually gets any in his mouth though. I could be wrong. Maybe when I am not watching he does?
This week I had a few reminders and concerns for the future. Next week is break up day, last school day for the year. I didn't even think about it but some of Jason's younger little friends at school are moving on to the next school because of their age. It did upset me quite a bit when I realised that my little boy won't be moving on and then I started worrying about the future and whether Jason will need to go to a special school? Anyway after feeling down about it, when I got home there was Jason's "work" he had done this last term, all his beautiful paintings and picures he had stuck glitter and cotton wool and drawn and painted. That just made me realise how far our little boy has come and how cleaver he is. I guess it's hard for me not to compare Jason with other kids, especially younger kids. When those kids are talking, saying colours, using the toilet etc. it does make me "jealous" that my little boy can't do those things.
Then I have to remember how far he has come. From a 1kg tiny 38,5cm little boy to an amazing little boy who has come so far with everything against him. He is a real little toughie and God had brought him and us through all the obstacles in our way!!
I've been thinking a lot about Jason's bedroom at the moment. I really would like to put Jason in a bed. He is happy in his cot, not worried at all, doesn't want to climb out etc. But I would love him to be in a bed now. Problem is his feedng pump at night. He is fed while he is sleeping on a pump with a long tube attached to his mic-key in his tummy and if he had to get up he would rip it out. So changing his room isn't the best option at the moment. I guess I could still paint the walls and change a few things leaving the cot until we can get rid of the pump. I want to change his room to an underwater/fishing room. He will love that!!
Therapy wise I haven't been able to see the speech therapist yet with Jason being sick. BUT I think I have found a psycologist that can evaluate Jason and she will be able to give us some answers to our question on autism? She suggested we don't do therapy just yet to rather wait until she has evaluated him and we take it from there.
We have been battling to get Jason's milk - paediasure plus which is THE mamba milk that has helped him with his calories. The paediasure plus is 1.5kcal compared to ordinary formula's which are 1kcal. BUT do you think we can get it?? I have been waiting about 5 weeks now for delivery to Dischem and I have actually given up. They say with Christmas all the government hospitals doubled their orders leaving no stock and they are waiting for the shipment. I am going to try another one called Nutrini which is also 1.5kcal. The great thing is the Nutrini is R18.30 for 200mls wheras Paediasure Plus is R24.80 for 200mls and the Nutrini will be delivered to us from Joburg, no hassles. The only problem is we have to see whether it agrees with Jason. We have ordered 9 bottles (3 days worth) to try which should arrive tomorrow or Monday and HOPEFULLY they will be ok and milk problem solved.
So as you can see we have progressed a little. I am looking forward to the psycologist assessment and we will take it from there. The report from Austria was 30 pages long and is with Jason's doctors. We will see what they have to say about the report.
Thank you to everyone for all your well wishes, messages and emails. I love hearing from all of you