This time 3 years ago I was lying in a hospital bed with a foetal heart monitor strapped to my belly not knowing whether our unborn baby would survive the planned c-section the next day. Looking at him now our little man is lying in his cot without a worry in the world. Only mommy and daddy and of course those close to him worry about him, he is a true miracle and a gift from GOD. What an amazing little boy we have, through all his hardships and troubles in life, he is still the most happiest little guy!! We love you our little man, you are the most amazing child a mommy and daddy could ask for.
Today we saw the neurologist for our follow up after the test results. He wants to do further tests to try and diagnose Jason. Problem is each genetic test costs about R2,500.00 and we don't know how many tests we are talking about. There is no guarantee we are going to find anything, it's basically a process of elimination. The neuro thinks that Jason has a genetic problem where all his symptoms fall under and in order to find out what we have to test. Also wants another stool test done for malabsorption, a bone age x-ray and an assessment (R2,000.00) to be done to assess where Jason is mentally and physically and what therapy he will need to help him.
We trust the neuro's judgement and believe he knows what he is talking about but at the same time we don't have the finances to just go ahead and do whatever needs to be done.
Our feelings are we MUST go to Austria, help Jason to eat again and take it from there. We feel that most of Jason's symptoms are related to the fact that he will not eat and once he is eating he will improve.
It isn't easy having all these decisions thrown at us like this, but as parents we have to make the decision that we think is best for Jason. We can go on and on testing to try and find a diagnosis but that diagnosis isn't going to change the fact that he needs to start eating and being a "normal' 3 year old little boy.
It's hard making these decisions for our little man when we don't know for sure what the right decisions are for him but we have to have faith and trust that God will lead us in the right direction and the direction that is best for Jason.
Tomorrow our little man turns 3 years old, what a special day, what a miracle!!
Today we saw the neurologist for our follow up after the test results. He wants to do further tests to try and diagnose Jason. Problem is each genetic test costs about R2,500.00 and we don't know how many tests we are talking about. There is no guarantee we are going to find anything, it's basically a process of elimination. The neuro thinks that Jason has a genetic problem where all his symptoms fall under and in order to find out what we have to test. Also wants another stool test done for malabsorption, a bone age x-ray and an assessment (R2,000.00) to be done to assess where Jason is mentally and physically and what therapy he will need to help him.
We trust the neuro's judgement and believe he knows what he is talking about but at the same time we don't have the finances to just go ahead and do whatever needs to be done.
Our feelings are we MUST go to Austria, help Jason to eat again and take it from there. We feel that most of Jason's symptoms are related to the fact that he will not eat and once he is eating he will improve.
It isn't easy having all these decisions thrown at us like this, but as parents we have to make the decision that we think is best for Jason. We can go on and on testing to try and find a diagnosis but that diagnosis isn't going to change the fact that he needs to start eating and being a "normal' 3 year old little boy.
It's hard making these decisions for our little man when we don't know for sure what the right decisions are for him but we have to have faith and trust that God will lead us in the right direction and the direction that is best for Jason.
Tomorrow our little man turns 3 years old, what a special day, what a miracle!!