I started the homeopathic medicine a few weeks back and I really think this is helping. His chronic diarrhoea has improved and we are even managing to get him to the toilet a few times :-). Holding thumbs that toilet training can continue. We need to get him out of nappies!!
Eating still isn't happening. I really thought when Nicole came alone she would help with the eating but at the moment he still won't accept food and won't drink enough to say he drank a cup of water. I am sure it will come in time. I am still positive that we will tube wean him one day :-). Watching Nicole eating every day amazes Bruce and myself. We can't believe that she will just eat and drink everything and anything. We NEVER had this with Jason so this is all new to us. Maybe when she is older and can communicate with him she will show him how it's done.
It's just great to have Jason back. To see him running and smiling and singing and swimming. Eating and drinking will come in time.
Last weekend we went down the coast to Bruce's folks and Jason had an absolute ball swimming and playing with his granny. He was in his element. Yesterday we were at my folks and again he was swimming and having so much fun. It's great to see him happy.
School has been on my mind a lot this week. It's hard not having any schools in our area that can accommodate Jason and his needs. At the moment the closest "possible" school is half an hours drive there and half an hours drive back, which means 2 hours of driving every day. I haven't seen the school yet but I have spoken to the therapist and have an appointment to go see the school next Tuesday. Holding thumbs that they can accommodate Jason. The school fees aren't cheap and they did advise that he may need a facilitator (someone that goes to school with him). If we need a facilitator we may have to re-think our options as we just cannot afford the school fees, a facilitator and the traveling costs. There is another special needs school which apparently is fantastic but again very far away (4 hours of driving) and getting Jason there and back and making sure he is fed during the day would be a problem. WHO knows maybe by next year he will be eating and out of nappies - I really hope so.
I spoke to the geneticist last week regarding the metabolic test that has taken almost 2 years to do. This has really bugged me that we cannot get the answers that we need. While we sit and wait for them to do the test we are the ones that have to deal with his medical issues and fact that he hasn't been diagnose, all because they are "short staffed". Apparently Jason's DNA has been extracted so we mustn't worry, the blood is still viable for the test. She will try and speed the process and get back to me as soon as possible. Again she advised that we can do the micro array analysis test in the UK by sending the blood but that will cost us a lot of money once converted. It is still something that is on my mind and I will discuss it with Jason's pediatrician. I know a name or a condition may not give us the answers or a cure BUT at least if Jason had a diagnosed condition we would be able to fight our medical aid to get all of Jason's medical expenses (nutritional requirements and medication) covered under chronic. This would help us hugely as our monthly expenses for Jason cost a fortune and we are relying on donations to help us.
We never know what lies ahead, we cannot predict our future. Jason has done so well to get to where he is today, it's a miracle that he is alive. We are really proud of his progress. His speech has improved, a year ago he wouldn't touch ANY food or drink and now at least he will try. He is such a happy, bubbly little boy and handles all his medical issues like a champion. Every 3 weeks when we go to hospital for polygam he races into that hospital and isn't fazed that he is there. He knows that is a part of his life. He lies on the examination table and hands the nurses his arm and even shows them which vein to use. He isn't worried about these things which makes it so much easier for us as parents. I am really proud of him and proud of everything he does and handles. Jason is my hero. Not many people get to meet their hero well I gave birth to mine :-)