Jason is doing well (touching wood). We made the decision to put him back at school which was a good decision. He is loving school with his "friends". The interaction is great for him plus he is trying to eat more. His first week at school was fantastic, he started eating little bits here and there again. Very exciting. Sitting with his "friends" eating and drinking definitely helps. He wants to be part of the group. He has munched on apple, pear, cheese, yoghurt and carrots at school. Every day we send him to school with his lunch box. Sometimes he tries things and other times he doesn't. In Jason's case eating definitely comes with feeling good and being healthy. No-one wants to eat when they feel sick and want to vomit. What is the reason or the change?? I think it's the medication we started him on for cyclic vomiting syndrome. Well I hope it is the medication and not just a good patch. He did have a weekend where he started gagging again but that may have been formula related as well.
We have tried the Peptamin Junior Advance a few times which is 1.5kcal for weight gain but it doesn't seem to agree with him. He tends to wake up shaky, it makes him poo more and he often says "tummy sore". So we are going to try and see if we can return the 12 bottles that we brought and try go back to Nutrini Peptisorb and Neocate. Neocate is definitely the best that he tolerates I would say as it doesn't go straight through him (he doesn't poo much at all). Neocate is an elemental feed (completely broken down) whereas Peptamin and Nutrini is semi-elemental. This is the reason, Jason's body absorbs the Neocate as his body doesn't need to work as hard breaking it down. I have seen Jason's dietitian today and we plan to stop the Peptamin, hopefully get a refund and proceed with Nutrini Peptisob and Neocate. The calories in them aren't as high but he tolerates them better and feeding is easier therefore we can try and meet his daily requirements for his weight. His weight isn't too bad. He is gaining weight which is great just not as much as we would like to. This is obviously volume related as we are slowly increasing feeds to try and get to the 800mls during the day and 800mls overnight. With going to school he is getting that 4 hour feeding break as well which will encourage him to try eat orally. We would also like to get to a position where he is eating orally of course so will try and encourage him to take Pediasure orally during the day. BUT one thing at a time. We are going to try the Nutrini Peptisorb first and see how he does on that with the Neocate.
Eating is obviously top priority for us and we are seeing positive steps with him feeling better and wanting to try things. His sister still does her part by shoving food in his face which he simply says "no, no, no". I am trying different things at home with him like involving him in cooking, making popcorn together, always offering him his sister's food and then school is helping a lot. So our priorities are definitely still to have Jason eating and drinking.
Speech and occupational therapy is going well. The therapists are very happy with his progress and noticing huge changes in his understanding, speech and interaction.
On the cards in the future - kidney tests to check his kidneys and the reason why he has protein in his urine. Also need to see the endocrinologist to check his hormone levels and blood work. And then to go into theatre to check the urology procedure that needs to be done. But one thing at a time. My gut feel is the kidneys and the urology problem is a cause of a lot of Jason's problems. He has had these problems from before birth but were never "picked up" or "seen to" due to all the other problems we were dealing with. These problems got neglected in the process. So I am looking forward to some answers as hard as it is going through all the procedures and admissions, it is a step closer to helping Jason.
We are in hospital today for Octagam - this is why I have free time ha ha ha. This morning Jason asked me "where's Dr. Pather". I replied "we will go and see him later". His response to me was a huge jump in the air with both arms out shouting "YAY". This weekend driving past Kingsway Hospital he saw the Netcare sign and pointed at the hospital and shouted "Dr. Pather". He clearly loves his doctor to bits :-).