We had a bit of a scare last week. On Wednesday Jason was sick at school. He was gagging and vomiting and had runny tummy for some reason. Jeanette his teacher said that it was one of the worst days she has had with him. Wednesday afternoon he gagged a few times and had that "not feeling lekka" face. Thursday he was fine, one gag and then on Saturday one gag. We are not sure why he had this but are very glad that it has passed. This brought back so many memories for us and we thought that maybe he had an infection of some sort. History with Jason shows that when he gags and vomits he normally has an infection. We have been really good with sterilizing and replacing tubes and syringes regularly as well. I guess all children have bad days and we need to remember that it's possible for Jason to get sick without getting so sick that he needs to go to hospital.
Eating wise he is still eating a variety of things - egg, chips, biscuits, custard, sauces, sweets, chicken, mince, bacon etc. Swallowing is still not happening, he is so good at holding that food but it will happen one day in Jason's time. We are just pleased that he is happy to try a variety of tastes and textures. The other day he did have some custard with me, had our own little play picnic and he happily ate with his spoon, me with mine AND..... he swallowed!!! Still doesn't want liquids like juice or water out of a cup or bottle. Jeanette says that he wants his cup at school, has to have everything the other kids have but not wanting to drink yet.
I have been in touch with the Professor from Austria and updated her on Jason's progress. She said that the swallowing will eventually happen. We are going to hold out on the net coaching (tube weaning via email) until Jason's weight is up some more. She is away in January so we may start end of January. I am nervous and hope that Jason starts to swallow before then but my friend Carla said Gabbie only started swallowing when she was hungry and when she wasn't tube fed. Gabbie was in NICU with Jason when they were born and Gabbie had a feeding tube for over 2 years and is now tube free and doing really well.
The pattern with the tube weaned kiddies is it still isn't easy. They don't just suddenly take off and start eating everything. They are still fussy, they are still sensitive to certain tastes and textures. The weight gain isn't easy, sometimes they lose weight, they still get sick like all children and go off their food. BUT most of these kids haven't eaten in over 2 years so they have a lot to learn. Gabbie is doing well, ate a whole bowl of spaghetti last night including the cheese and mince. Tayden is eating and drinking really well, is such a little star. He has lost 300 grams since Graz but hopefully he will gain that again. Matthew is doing really great, is loving his food and is the fattest he has ever been. Andrea gained weight nicely but with being sick and has lost a bit again.Thabitha is eating lots of chocolate and Vicky is able to syringe her milk into her mouth. The others I will have to get an update from their mom's.
I am glad to see I still have followers reading the updates. The messages, emails and phone calls are great encouragement, Thank You!!