We are still waiting for the results for the repeat metabolic tests to see what the Pretoria team have to say regarding that and what the next step is whether we should have Jason tested for mitochondrial disease. When we had octagam on the 30th December, Jason's paed was away and another paed came to see us. I had a long chat with him about mitochondrial disease. He has a patient that has mitochondrial disease and I asked him whether he felt it was worth testing and doing the muscle biopsy. In his opinion he thought it was important for us to know whether Jason has it or not. It will make our lives a whole lot easier knowing if he does have it. He said that the most expensive part and complicated part of the test is couriering the tissue to the UK. This is expensive and lots of regulations etc. He didn't think the test itself was that expensive. I was thinking of doing this when the paediatric surgeon has to put him under to check out the urology procedure (hypospadias and chordee). Unfortunately a spanner has been thrown in the works now as our brilliant paediatric surgeon is relocating to Cape Town. I have been in contact with him and he did say that we will deal with Jason's issues as they arise and he is only 2 hours away. All very well but that means a two hour flight, being in another province and the extra costs involved. I guess I mustn't worry about that right now. I still need to find out what the endocrinologist has to say about Jason's hormone tests that were done in August and I guess we will take it from there. This is a HUGE loss to us as Dr. S has been seeing to Jason since his peg was placed in 2008. He is a brilliant surgeon and not only that a wonderful man with such a good heart. I am sure things will work out.
Feeds are coming along nicely. Last weekend I started challenging Jason with oral syringe feeds again. We haven't been able to even try in the past due to his nausea. Even peg feeds have been difficult but the last 4 weeks since we have started the new medication things have really improved. I started with 100mls orally (with a syringe) and he has been doing really well. We have actually worked our way up to 200mls orally every 3 hours. The past three days I have managed 600mls orally which is a HUGE milestone for us. It's so nice to know that his feeds are going in his mouth and through his digestive system now instead of straight into the peg and into his tummy. He is now tasting and gaining confidence with drinking and swallowing. I have also tried some yogurt when I give Nicole but he doesn't open his mouth wide enough yet. He opens like a little bird :-). I am also trying to wean him off Neocate for two reasons. One being the cost factor of course as Neocate costs R460 for a 400g tin which only lasts just over a day and two Neocate is designed for infants up to 12 months. So we have tried Pepticate and also Peptamin and so far, so good. I offer him food all the time. Something he has wanted to try often is grapes. He is interested to put a grape in his mouth and roll it around a bit, taking it in and out. Usually I end up eating the second hand grape but the fact that he is trying is good enough for me. We will progress soon. Onions is still an all time favourite and ice cream too.
Speech is also coming on so nicely. I am noticing so many more words and sentences. I always knew that he understands everything we say and is taking it all in. I have NEVER underestimated him. The other day I had quite a chuckle - Jason and Nicole were standing together and I could smell a poo. So I said to them both "who has done a poo". Jason suddenly points to Nicole and shouts out "Nicole farting" :-).
On Thursday we have Jason's new Special Needs School orientation day. We are going in the afternoon for an hour for a tour of the premises and to find out what to expect from the new school. It is a brand new private school that is starting this year. They haven't got funding from the government and have had to do all their own fundraising to get this dream up and running. The idea came from an occupational therapist in our area and a mother and father who have a special needs child. There is no-where for our kids to go besides the special needs schools that are far too far away and would require travelling about 45 minutes there and 45 minutes back. SO this idea came about and they have made their dream a reality. We are blessed that Jason can be a part of this new venture with them. They have temporary premises and are currently looking for more permanent premises. I believe to start off with they have only 7 kids starting which is fantastic for us due to Jason having combined primary immunodeficiency. That's less bugs going around for us. I am very excited about it. Obviously there are always nerves of wondering whether Jason will fit in, will he like his new school, what about his friends etc. BUT Jason does adjust pretty easily. This will be different for him as it will require a lot more work on his part and a lot less play. He will no longer be at a play school, more a learning school. I am sure he is going to grow and thrive in this environment as they will be focusing on Jason's needs and areas that need working on. The school fees unfortunately are expensive but this an opportunity for Jason that we cannot let pass. We will have to look into fundraising again soon as the trust funds are running low. The school suggested finding a corporate to sponsor Jason's school fees but I have no idea how to approach companies and what the rules are regarding corporate social responsibility.
Otherwise we are also starting to see some weight gain. In November Jason lost about 1kg when he was so sick with the nausea, vomiting and diarrhea and he went down from 16kgs to 15kgs. We are now back up to 15.8kgs and I am sure with the pediasure and peptamin we will start seeing some more weight gain in the future.
So all in all I am a happy mommy!! Thank you for all of your support, prayers and encouragement all the time and thank you to all the monthly pledgers that continue to deposit their monthly amounts into Jason's Trust fund that assists with his medical costs. Your assistance makes a HUGE difference in our lives and we would not be where we are today without your help SO thank you VERY MUCH!