Well it appears that Jason did have a gut infection after all. He had diarrhea, vomiting and gagging for 4 days. Eating and night feeds were very slow and he did lose 600 grams during that period. BUT we have managed to gain 300 grams the last week and he is 100% fine. You can see he has lost a bit but we will get back up to 15kgs again. We have started pediasure (high calorie milk) during the day in order to increase his calorie intake. The only problem is it seems like the pediasure causes a runny tummy - so he gains weight but poos more! Never ending battle! He is eating well again (with a syringe still). Yes a syringe still. Everyone asks why and tells me that I should use a spoon, which obviously we know that but if we want to get rid of this feeding tube one day we have to get the eating right first. My main priority is getting him use to food, taste, textures, chewing and swallowing. The spoon can follow when we have mastered that and are actually able to "play around" with food but for now I am sticking to the syringe so that we can get the calories in during the day. I did try the spoon yesterday again to see if there was any improvement. One teaspoon of food takes at least 4 attempts to get that little bit of food in his mouth!! So we would NEVER get enough food in during the day. I am not too bothered about it at the moment. It bothers other people more than it bothers me to be honest! He still doesn't try anything on his own besides onions. Bring onions and he comes running but give him a biscuit, a sweet, any type of food - hand it to him and he will throw it down. Not a chance will he even attempt to eat on his own or even snack. Something so natural to us.
Therapy is going well. Jason's therapists can't believe how much he loves therapy. He must be the only child that dashes in there and anounces his prescence so excited to do therapy! We have now increased his therapies twice a week so on a Monday and a Friday he has a half an hour each of speech therapy and occupational therapy. I am sure the extra therapy will help a lot. It definitely helps him. I sit outside the room listening to him during speech and listening to all the words he repeats. There is a huge change. The other day I was so proud he said his first two word sentence. We were in the bank in the queue and he suddenly said to me "come home" LOL. So cute.
Last weekend Bruce and I had our very first night out together in 5 years (since Jason was born)! We went to a wedding of a very good friend while gran and grandpa looked after Jason and Nicole for the night! We danced the night away and it was fantastic just not to worry for once! We were able to let our hair down and enjoy ourselves. Even though we only got to bed after 1am, I was still able to get 5 and a half hours straight sleep. The most I have had straight in years! I am normally up for Jason at least 3 times checking on the tube and pump and once for Nicole.
It's funny how "Jason's Journey" began with the idea of us raising funds to go to Austria to help Jason to eat and here we are two years later still trying to get our little man to eat. It doesn't matter though, I am confident that our little man will eat on his own one day. One day we will be rid of the feeding tube that saved his life. As a very special surgeon once said to us "in Jason's time".
I still have SO many ideas in my head that one day when I have time I would like to actually do. One of them would be to write my book about Jason. I would like to get a South African support group and website going for tube fed children and tube weaning. On my website I would like to have all the information about No Tube in Austria for those that wish to go. I would LOVE to get a public benefit organisation (PBO) trust fund registered specifically for tube fed children to help families with finances and also to help them to get to No Tube in Austria to wean their children. I feel that there is such a need to help these children and families yet no finances to do so. If tax payers could make donations to the cause and get a tax deduction this would work. I would love to get the right people together in South Africa for each and every one of these special children. To raise funds, get the community and right therapists involved so that we can help these children and their families. We were SO blessed to be able to go to No Tube in Austria to experience the whole tube weaning experience and gain the knowledge of how to help Jason and other children with tube dependancy. We could have NEVER done this on our own. Each and every person that donated money, that had fund raisers, that sold raffle tickets, that donated prizes, that spread the word helped us get there. I would like to do this for others myself but I am just one person. I have always believed that the beginning of Jason's journey was just that - the beginning! I believe that through our experience with Jason and through contact with other parents and families of tube fed children the word of tube dependancy will eventually spread and I can help all those families get the tube weaning, schooling, therapies and specialist care that they all need. At the moment it is a great dream of mine but one day it WILL become a reality!