I miss seeing my happy little man. At the moment he has NO energy. He doesn't want to do much besides lie and watch TV. He is lethargic and I can see he isn't well. I feel there is a missing piece to this big puzzle. There are still diagnostic tests that need to be done. The urine and blood test we needed to do will last week would have cost R1,500.00 so we decided to rather wait for polygam for the next admission. Then there is the genetic/chromosome test that hasn't been done due to "staff shortages". The blood was taken in May 2011. I am going to make enquiries and try and find out surely someone else can do this for us. Surely South Africa is not that far behind the rest of the world that we can't even do a test like this. I don't know I would rather have a name if there is a condition. Not knowing what is wrong with Jason is really hard. The doctors don't know. Really what they do is treat the symptoms as they come. What more can they do?? We don't have a genetics specialist in Durban that we can just drive to and see. Everything is in Cape Town or Joburg.
It's very hard for me to get into the Christmas spirit at the moment. I can't even go Christmas shopping with my two children and enjoy the experience., get some Christmas pressies and get into the spirit. I did try get out today with my two kiddies (Bruce is away this weekend). I can't say it was the best experience with all the gagging going on and the stares we got. It's hard watching everyone with their happy, healthy children enjoying themselves and we are just trying to get out a little. The gagging is terrible to see and we do get a lot of stares. Bruce and myself are so use to it whereas the shoppers are horrified and stare when they see Jason battling. All we can do is touch him and re-assure him. If he is going to vomit, he will vomit but we cannot stop our lives and stay away. It may not be a great experience but at least I got my two kiddies out the house.
Tonight again I have increased his night milk to try and make up for the loss in calories during the day. Jason is getting taller but he is so thin. It's like fighting a losing battle. I know it's not the feeding tube because I did a trial run of stopping night feeds for 8 days and still without his night milk he was gagging and vomiting. Also stopping tube feeds didn't make him eat any more so he was just losing weight. One step forward and 5 steps back. I just have to keep the faith that our little man will feel better soon and I keep praying for answers but these things happen in God's timing not ours!!