Dr. P spoke to the surgeon with regard to the possibility of an endoscope. He advised before we do an endoscope he would like to see the results of the metabolic test as well as a fecal elastase test. The fecal elastase test is no problem, we have sent that off today for testing but the metabolic test is another story. This is the one that we have been waiting for since May 2011 so doubt that is going to happen anytime soon. We have also done another M C and S stool test which tests for any viruses. The fecal elastase test from my research measures how well the pancreas is functioning. We have also done a blood culture test to test for celiac disease.
Again Dr. P said to me today that we need to raise funds and take Jason to the UK to see a gastroenterologist there. Although we have one in Cape Town we do not have the diagnostic testing facilities here to do the tests that need to be done for Jason. Jason has an undiagnosed condition and the metabolic, DNA and chromosome tests that need to be done cannot be done here because we don't have the technology or means to do it. He said we need to raise about R300,000.00 - OH DEAR!! I have done the fund-raising thing already for Austria and it's HARD work. It is something to consider but goodness me not so easy to put into action. I am exhausted as it is and even without going to the UK we need help financially with Jason's his medical expenses. So for now I will put this in the back of my mind.
You will note on the left menu I have created a new tab called "Fund-raising events". I am appealing to anyone that is able to assist with fund-raising to let me know. All the help we can get would be greatly appreciated. An old school friend of mine has very kindly offered to arrange a golf day at Simbithi Country Club in Ballito. SO if you are in Durban and a golfer keen for a fun day of golf for a good cause, please email Tarryn. If not but you are willing to spread the word, that would be great as well. I have attached a pdf file to the fund-raising page for you to email or share on facebook.
Otherwise Jason's blood levels are still low and we have to keep him off school longer. Shame the poor child has only been to therapy and home. I haven't even taken him near any shops in fear that he may pick something up while there. He is pretty bored at home and I am sure missing school and his friends terribly.
He is looking a lot better as you can see from the picture below. Feeding him is back on track and his hydration levels are looking better on his bloods. Just this diarrhoea to go away now. BUT hopefully now that we have stopped the antibiotics and Klacid this will help.
The time is now 17:50 and one more bottle of polygam to go. We have been here since 7:30am so a VERY long day but at least that is us done for 3 weeks.