It’s been a while since my last update but I haven’t had too much news to report.
Not too many changes really. We are still trying to keep up the daytime calories and get off the night milk but that is not happening at the moment. Jason has been on and off gaggy and daytime feeds have been challenging. There is no pattern, I can’t say what it is. Any desire to eat on his own is not happening. He hasn’t been well and shame feeding him makes me feel bad because not long after he starts gagging and feeling sick. His chronic diarrhoea is worse than normal so I am not sure if he has an infection. Yesterday I had to give his tummy a break and stopped all feeds. His tummy you can hear is not right constantly making huge griping noises. At the moment I don’t really know what to do, whether to increase night tube feeds or continue to just keep trying during the day. I guess time will tell. With Jason he can change hour to hour. One minute he will be sick the next absolutely fine again. Today he was a lot better than yesterday, thank goodness.
On the 29th August we had polygamy for the day. Unfortunately it wasn’t the smoothest day with the drip giving us hassles. We got to hospital at 2:00pm after school and work and normally the octygam takes about 4 hours to finish. Problem was the drip was giving us hassles and beeping nonstop. At first I thought it was the bubbles (if you get bubbles in the line the machine warns you) but after getting all bubbles out we eventually changed the drip line, then changed the machine and still no luck. It turned out that it was Jason’s vein causing the blockage and the fluid wasn’t going in. So we had to re-drip and then it continued smoothly. It was a very long day – we only eventually got home at 10:30pm.
Therapy is going well and his speech and understanding is really improving. In the afternoons we have been practising with lots of educational games and I am most impressed with what he actually knows. We have been doing these audio cds where a sound is played and he has to point to the picture that corresponds with the sounds. These are used for his “listening” skills and I must say he knows a lot. He also concentrates well with these as to him they are games not work. He absolutely loves therapy which is wonderful and having speech and occupational therapy twice a week is really helping. We are focusing on his listening, his speech, his colours, shapes and numbers. Although he is 5 years old he doesn’t know his colours, numbers and shapes despite practising a lot. It will happen we just have to keep with the repetition and slowly he will get there.
Jason loves his younger sister and it’s too cute seeing how the two of them interact with each other. He has taken his big brother roll very seriously and looks after his sister giving her lots of kisses and cuddles. The other day I gave Nicole a raw carrot to chew on for her gums (she is teething) and she chewed on it for a while. But the funny thing was how Jason wanted THAT carrot putting it to his mouth and pretend eating it. He would put it in the fridge then take it out and put it back. He ran around with the
carrot for two afternoons very attached to it. This just tells me that in time and when Nicole is eating I am sure Jason is going to follow in her footsteps showing a bit of jealousy and showing us that he too can do it.
I have a lot of hope because little Matthew (who went to Austria a few months before us) has suddenly started eating a variety of things all on his own. His parents have been doing the same thing as us for years now pureeing everything and feeding him but all of a sudden he is eating chocolates, bread and a few other things. As Jo said don’t give up it will happen and I know it will, it’s just a matter of time and a whole lot of patience. I know that one day Jason will just decide that he is going to eat. In Jason’s time not ours! But for now we continue to encourage him and never give up and keep the faith!