The past 3 weeks have been very eventful. Jason has gotten over his chest infection. It has taken a while with just a lingering cough and gagging but after seeing Dr. P today whilst in hospital Jason was examined and his lungs are clear. So it isn’t in the chest anymore which is a huge relief! He said that Jason has a chronic sinus problem and I MUST give him his Avamys nasal spray every day (which I always totally forget with all the feeding involved in a day with two kids. So at least his chest is clear. What’s happening is the sinuses are causing a post nasal drip and mucous is building up at the back of his throat causing him to cough and also gag on the mucous! We have Acc 200 to hopefully
clear the mucous.
Therapy is going really well. He is picking up things nicely with all the added therapy and constant repetition. He is learning his numbers and colours nicely. Thankfully he LOVES therapy and can’t wait to get started! Swimming is going well; I just wish the weather would improve so we can keep it more regular. BUT he LOVES swimming. He must take after his dad. I am sure he is going to be a diver like his dad in the future.
I was chatting to Jason’s paed and dietitian about his eating and tube weaning. It was great to hear two medical specialists say to me that I am doing a great job and that Jason has come such a long way with his eating and tube weaning. Both of them said to me that Jason is doing fantastic and they both feel that all it will take is time! We have done the whole starvation wean twice and Jason doesn’t eat when starved!! I chatted to Jason’s paed and dietitian about it today and they both feel the same. Jason will eat in Jason’s time and it’s a matter of time and patience. Our little man will surprise us all one day and he will just one day decide to eat! Hopefully Nicole will be the key to help when she starts eating finger foods with us at the table!!
While in hospital today I noticed the parents next door feeding their son with a syringe. Wow it really made me feel “normal” for a change! Strange how something so abnormal feels so normal to me and I really understood how they were feeling trying to get their son to eat. I know there are a lot of parents in this BIG wide world in the same boat as us all battling to feed their children. It’s such a difficult situation to be in and unless you are in the situation, it’s very hard to understand. Something so natural is so unnatural to them. I watch Nicole daily how everything goes in her mouth without even thinking. It’s a natural event, something that Jason NEVER had. I am glad Bruce and I are able to experience “normal” with Nicole. It was important for us to have “normal”. As for our special little boy eating is not normal for him but one day he will realize that it is.
The chronic diarrhoea is still a problem. I would like to have Jason’s stools tested for malabsorption but trues bob he hasn’t done a decent enough poo in order to test! There isn’t much they can do for the diarrhoea besides regular Imodium (which I have tried and hasn’t helped). He is already on one of the strongest probiotics on the market which costs a fortune and that doesn’t help. I am thinking of going the homeopathic route and seeing whether a homeopath can help. As far as his diet is concerned, the dietitian says that he is getting a variety of foods orally during the day which is great and he is on the best formula for absorption at night. So no changes to his diet. We have to justkeep doing what we are doing and encourage him to eat. Adding high calorie powders, oils, creams etc. just aggravates the diarrhoea.
School broke up and is already back. While school was closed Jason went to another school in our area which I call his “holiday school”. The owner and the teacher gladly accepted Jason for two weeks and he had an absolute ball with all his new friends and activities. Jason is so easy going with change. He went to this school in December so he remembered the place and in the teacher’s words “it’s like he never left”. He fitted in so well and had a wonderful time - he swam, played in the sand pit, played on the jungle gym, watched movies and even ate some popcorn and yoghurt!! You will see they had a pyjama day the one day where all the kiddies went in their pyjamas – too cute. See the picture below. Jason is in the corner and SEE he has a bowl of popcorn on his lap!!!