So sorry to everyone with the lack of updates. There has been a few reasons for this actually. First of all I have been hectically busy with preparing for Jason's sister's arrival which is in a weeks time now and secondly there hasn't been too much news really.
Jason continues to do well with his eating which is GREAT. He is managing very well with his solid foods during the day eating with a spoon, although we still have to feed him but that is ok, he will eventually get use to things. We are managing 4 "meals" a day of 125mls solids with water and milk in between and then at night he is still on his 700mls formula. He isn't too fussy with what we give him and we have progressed onto "home cooked meals" cooked by ME! Makes me proud to be able to cook and feed him now :). I am making him vegetables and chicken at the moment with "desserts" like custard and yogurt and pears. I am sure we will progress to what we are eating but for now he is doing great. I have only recently started the home cooked foods and hope that this will help with his weight gain. The purities just don't have enough calories in them to keep his weight up. Also I am trying to give him milk in between as well and see if it makes a difference. I worry about the milk because that tends to make him more mucousy and gag and also he is a big boy now so needs to learn to eat more and eventually on his own. I am trying not to worry about the weight all the time though. The main thing is he is happy, healthy and eating!
Polygam last Wednesday went well. A nice smooth day that went nice and quick. Dr. P is so pleased to hear that Jason is actually eating. He is SO chuffed and very pleased with us for persevering with the wean. His bloods showed that he wasn't dehydrated so he is getting enough fluids and he didn't have any infections. He did have some fluid on the lungs from the post nasal drip so we started nebulizing and gave a cough mixture and antihistamine but no antibiotics. I am amazed how nicely he has fought this one off without the help of antibiotics. It has been a nasty one but he has been fine - infecting Bruce and myself as well and we have been battling with the head cold and cough now. So the three of us are all trying to get over this flu.
On the weekend we had my baby shower. It was nice hearing all the lovely comments from family and friends telling us how well Jason is looking. I got to say he is a different child. He is so full of beans, so happy and is like a little boy now. It's great to see and the timing is great as well before his baby sister arrives.
As far as the night milk - hmm not sure when we will be in a position to stop that. I am still in touch with Austria via net coaching and they agree that we cannot afford him to lose more weight. The thing is by reducing his night milk he isn't exactly going to eat any more during the day. So I feel the only answer is to get him use to eating and with time and a whole lot of patience he will be eating on his own without us having to make him eat. We still have to feed him, he will not just take something and try it on his own - besides onions that is!! He is getting more adventurous trying things I ask him to try like yesterday he tasted some pineapple and some pear for the first time. He will now open his mouth and taste at least. Also the cup is coming back. He has started drinking little bits out of his sippy cup again and will walk around with it and drink on his own which is great to see as well.
I really want to get him off his night feeds as soon as we can because that will mean he is tube free and won't rely on his Nutrini night milk, pump sets, pump bags, mic-keys etc. These things cost us a fortune every month which the trust is still paying for but I would say in about 4 - 5 months the trust funds will be finished. His milk alone for Nutrini is just over R65.00 for 500mls and he has 700mls a night. The pump sets are over R100 each and we are meant to use one a night (which we don't because we can't afford this), the mic-keys when they break are almost R2,000.00 each and then his speech therapy and occupational therapy are over R1,600.00 per month. The sooner we can get tube free the better but we are getting there. Baby steps right! I am just amazed at how far we have come from December - no eating or drinking to the great progress we are making now. It's a matter of time and I am sure when Jason's baby sister makes her appearance and shows him how she drinks and eats I am sure she will be a huge influence and good competition for him too!!