I managed to visit the one possible school for Jason on Tuesday. We are looking for a school for next year that can accommodate Jason's needs and a school that can help Jason move forward. He has been in a little play school for 3 years now but he has outgrown his little play school. He needs more one on one attention to help him with his speech and development. He definitely understands but he is battling to communicate. He basically needs speech and OT on a daily basis so really we need a school that can help with this. This little school I visited on Tuesday was REALLY lovely. I was really impressed by it. I met the teacher and the occupational therapist. The school seems perfect, it is a special needs school for special needs kids with all different needs. They will definitely get the attention that Jason requires as the speech therapist and occupational therapist is there daily. They teach the children sign language which would be a good thing to help Jason with communication as well. The other great thing is they only have four children in the class. SO that would mean less bugs for Jason to get sick. There are two HUGE problems though. The first one is the finances, the fees are high because it is a privately run school and receives no support from the Government so they obviously rely on the school fees to keep the school running. Besides the school fees is the distance and traveling and costs for traveling. To get Jason to school and back would mean about 140kms a day which will also cost a lot in petrol costs. Plus they would need to let us know if Jason needs a facilitator. If he does this will definitely be out of the question for us. It would be great to have a facilitator to help with the drinking and feeding and learning but seriously this is way out of our reach. The other problem is again with the distance school is 8 - 12 and I work until 1. So in order to fetch him I could only work until 11:30 which isn't possible. There is another possibility that a school may open here in our home town, a school for autistic children I think it is but I will know more once I have been to the meeting which apparently is at the end of this month. I am interested to find out more because obviously having Jason just up the road is the best option for us, not just from a convenience point of view but also from a feeding point of view. Jason doesn't eat on his own so he would need to be fed soon after school. If he is far from home that will mean him missing out on a very important feed. Sigh the joys of raising a child that doesn't eat!! We just have to work our way around these issues.
On Wednesday I had an appointment at our local government hospital to see the pediatritian there and also the dietitian to see whether they could give us some help with regards to an insight into Jason's problems and also to see whether we could get some financial help from a nutritional point of view. I was more hopeful than what the appointment became. I guess I was looking for more answers but we are nowhere closer. As he said at the end of the day he is just a pediatritian and again the problem of being in SA and not having the testing facilities that we require. The best he can do is refer us to another hospital and specialists. Seriously I have done enough research to know who is and isn't out there. I know that we need to see a geneticist, an immunologist, a gastroenterologist, a endocrinologist and possibly another neurologist. I know all of this but they aren't in the province that we are. It was good to see another paed though for an option. He is a foreigner from Holland so it was good to know we were on the right track anyway. The dietitian was also really helpful, she knows Jason from a few years ago when we use to go to the hospital for assistance. They were able to assist with some formula and a few pump sets which was great but they are not able to assist with the formula we require. She wanted me to try a formula that we have tried before that Jason had a bad reaction to. BUT against my motherly instincts I decided that MAYBE just maybe he was going through a bad patch at the time, so decided to give it another try. Before trying the formula Jason has had a few nights where he has woken up gagging in the middle of the night or early morning gagging and feeling really ill. Well we tried the formula on Thursday. Bruce tried it orally at lunch time and he had a bad reaction to it by gagging badly. Later that night I decided to try it again while he was asleep thinking that I really need to give this a try. Well he had a violent reaction to it. He was fast asleep when I tried it via his peg (feeding tube) and not even 5 minutes later he was gagging terribly, really ill and instant diarrhea. So from trying something to assist with weigh gain it actually had the opposite effect. We couldn't feed him for the rest of the night so actually lost out in calories. Very frustrating. On Friday he still wasn't well woke up gagging at 5am and that was on NO night formula. His stomach hasn't been great, still bad diarrhea.
Speech wise he is REALLY coming along nicely. The words we are noticing are amazing and we couldn't be prouder. On Friday I asked him "Jason do you want some stew" and his reply was "no thanks yoghurt". NOW Jason rarely says a 2 word sentence and this was a 3 word sentence. Not only that, the fact that he actually asked for food!!! That's what amazed me besides his lovely manners :-). We are also noticing a lot more talking and words. When he is watching tv or in the car he points and names the animals and things, even listening to the radio and hearing sounds he knows and can identify the sound of the animals even. He is coming along so nicely and it's great to hear him communicating more.