Today has actually been a real smooth day. It didn't start out too great with the nurses battling to find a decent vein. Not their fault at all. With the amount of infusions and drips Jason gets his veins are just so tiny and really don't function too well. They find the vein but then the blood clots or it infiltrates and they have to try again. So after a few prods and pokes they called the neonatal ICU nurse and she managed to find a decent vein which has held out for the day. We have also managed to increase the rate quite nicely which means we should go home at a decent hour tonight. We should be finished by about 8:30pm.
I don't get near as much time as I would like to, to update this website. I know a lot of you follow my updates and are interested to hear how Jason is doing. Ideally what I would like to do is update weekly and hopefully I will get there. I need to write down the things for the week as so much happens in a week that I forget half the time.
I actually find myself lately so focussed on how well Jason is doing and how I would like to do some research on makaton sign language and making my own makaton books for Jason. Thinking about his therapies and his feeding and all good things that are happening. He is doing so well at school, he is doing great at swimming lessons and really doing well with his willingness to eat and try things.
Feeding wise we are still battling with the chewing and at the stage where we are a bit stunted with what he can and can't eat because of him not chewing enough or properly. Once he has this right he will be able to try a whole lot of other things but we have been stuck on this stage for a while. It's ok because it's a stage!! Not so long ago he wouldn't touch food and try new things. He is now at the exploring stage where he will eat strawberries, eat kiwi fruit, eat boiled eggs. The chewing is just a problem where he sometimes doesn't chew these things properly and ends up choking and vomiting. For me it does get very frustrating at times. The other night I gave him some mash, gravy and put bits of fresh fish hidden. He ate at the dinner table with us and it took a lot of time and effort to get that food down. Lots of chew, chew, chew cheerleading from myself, Bruce and Nicole and lots of effort for me to sit there trying to eat my dinner and feed him at the same time. Well he ended up choking and vomited and out of pure frustration I shouted at him and told him how long it has taken me to get that down his throat and shouted at him to chew and how he is 8 years old and should be eating. Shame I got this quiver lip from him and he started crying which had me crying - what a disaster.
Jason is at the stage where we need to push him further so we have now increased his feeding therapy from 45 mins to an hour session and started a speech session at school. Jason's speech therapists are amazing and working really hard with him and pushing him with his eating and his speech. We are really hearing some great three word sentences coming out and his makaton signs are really improving with speech and with school. This is something I want to focus on myself - makaton sign language to better our communication at home. Sign language has really helped improve his speech and communication. Unfortunately the Makaton sign language rescources don't come freely on the internet. I spent most of my day today looking up the signs but they don't share them freely. I guess we will have to buy some of the Makaton SA story books and DVD to help us along - the only way. Once I have some more signs I can actually work on my own story books for Jason which he absolutely loves.
I actually had lots more news which I will update in the next day or two. I need to update regarding Jason's upcoming kidney biopsy but I have run out of time as polygam has finished and it is home time. So if you are following, look out for the next update in a day or two :-). I will also update you on his protein creatinine results which I will get tomorrow - one of the reasons we are having to do the kidney biopsy and tests. Anyway I better run otherwise these nurses will think we want to stay the night and that is SO not happening.