The little school I really liked in Umhlanga is no longer a possibility at all. I emailed them following our meeting and advised them that I was most impressed with the school but of course was concerned about the possibility that they would want Jason to have a facilitator to go to school with him. Also the hours being 8 - 12 and I work mornings until 1pm half an hours drive away. Anyway I received a very nice email back but unfortunately based on what they saw and discussed with me they feel that Jason would need a facilitator because of the "feeding issue and toilet issue". A facilitator is anything from R3,000.00 - R5,000.00 per month. The school fees would be R2,750.00, petrol to get him to school would be approx R1,500.00 and aftercare would be R500.00. So in order to send him to that school we would be looking at no less than R7,500.00 per month! I personally don't see why he would need a facilitator. I did not ask them to feed him as we would feed him after school. All they would need to do would be encourage him to drink his water which he is capable of doing. I did look into another school suggested by an educational psychologist and when I phoned the school (which is a remedial school), after chatting for a while things were sounding good but as soon as the feeding tube was mentioned the lady started suggesting alternate schools for me. People obviously run a mile when they hear feeding tube!! I still have one option of a special needs school and I am waiting for the meeting to happen. It does sound promising and the school would be in our town. At the moment it is just all a possibility so holding thumbs that this will be an option next year. I guess home schooling is looking like our only option if this other school doesn't happen. Most schools are too far away causing problems with travelling, costs and of course Jason does have to be fed by a certain time as well. The other thing we have to consider is the size of the school as Jason cannot be around too many "bugs" because of his immunodeficiency.
Last night I got Jason's milk all ready in the bag and pump set to set the pump going and our pump has decided it's time for a service (beeping E10). These pumps you receive from the company on "loan" on condition that you buy 1 pump set a day. Well when Jason was discharged with his feeding tube 4 and a half years ago we received our pump on "loan". Obviously we can't afford R1,800.00 per month for pump sets and in the past we have managed to make a plan and get away with it. Two years ago we had the same problem and we managed to get a replacement pump from someone within the company that managed to swop our pump for another (on the sly). Well this has happened again and we are stuck with a pump that doesn't work. If I phoned the company we would be stumped because we are not "fulfilling" the agreement. They don't really know we have the pump. So the chances are the pump would be taken away unless we can find someone that can fix or replace the pump. The pump itself is not broken, it's merely a 2 year service alarm that goes off in order for the pumps to be serviced regularly. Sigh.
Unfortunately we cannot go without feeding Jason at night. He currently receives 800mls of medicated formula which supplies 3,360 kj. We cannot bolus feed (feeding him manually with a syringe) as he does not tolerate feeding this way. He has to be on a pump and gets fed 95mls an hour continuously while he sleeps. There is NO ways that we can supply him with any more calories than he currently receives during the day as he does not tolerate high calorie formulas and he does not tolerate any more volume of food during the day.
It just seems that no matter what we try and do for our son we get hit with problem after problem. It is very soul destroying and frustrating. I know that God is in control of every situation and I know that the right solution will happen. These little problems will be solved I know that but it's very hard when you are hit with financial difficulties, have a special needs child and everything that is needed for them revolves around money. I know a lot of you reading this have special needs children yourselves and are in a similar situation and some worse. It's hard, it really is! But his all comes hand in hand with raising a special needs, sick child.
Tomorrow is polygam in hospital for the day - three weeks comes around SO fast.