It has been ages since my last update - I am terribly sorry. Things have just been busy, busy, busy with having two kiddies in the house now. I don't get much time to do updates anymore but will try my best to update as often as possible.
So how is our little man doing? He is doing really well. Not too many changes since our last update. He still drinks his milk and water with the syringe and is eating 3 x 125mls pureed "meals" a day with his milk and water and at night he has 700mls Nutrini Peptisorb. His weight has gone up nicely since my last recorded weight.
Look he still eats like a little bird and we haven't been able to progress and reduce the night feeds just yet. This is a worry for Bruce and myself, we don't know how to progress from here. If we had to reduce or take away the night feeds he would not eat any more during the day and retain his weight. He is not like other children where you starve them and they will eat - not Jason. I often wonder if he actually gets hungry to be honest. The only time he does eat or drink is when we tell him to. He doesn't eat or drink on his own - doesn't pick up a sweet or a chip and eat it. They can be sitting there and he will totally ignore them not fazed by the food in front of him. The ONLY thing that he does want and does eat on his own is onions. He still eats his onions every day. Can spend over an hour with his cut onion and eat and eat and eat. So strange!! So how do we get rid of the feeding tube - I have NO idea. The other day I was thinking about this to myself, thinking how we still have such a long way to go with Jason, how he eats like a little bird etc. But then I thought at least he is eating now. Now I can enjoy an ice cream with my son where 4 months ago this was not possible. We have come a long way with him. Yes not fast but at least he is eating now.
School is also a big worry for us. What school is Jason going to go to? There are no schools in our area and the nearest "special needs" school is about 45 minutes away from where we live. How am I going to continue working and get Jason to school and back?? What school will he attend, what age does he need to start? You know all these questions were a lot easier when Jason was younger. Now that he is turning 5 this year it's getting harder as he gets older. When he was younger it was easier to accept, we use to think - well he is not talking but hey he is young. That is no longer the case - when will his talking improve? As an example I will ask Jason "Did you go to the beach today" and his answer will be "beach" or "Did you swim today" and his answer will be "swim". I don't know if he actually understands?
Do all these problems arise as a result of his brain injury (he has demylenisation on the left side of his brain) or is there another reason for this? We have investigated all the syndromes, genetic and chromosome tests and nothing has come back with a result. Then the other thing is Jason suffered for many years with gagging and vomiting, was hospitalized so often for pneumonia and bronchitis. He lost out on years of his life from lying on his back all day vomiting or in hospital being sick. This would also contribute to his delayed speech and eating problems.
One thing I have learnt through all the hardships with Jason is all we can do is take things one day at a time and deal with what we have. Jason has come SUCH a long way. As Bruce says often - he has "walked the white line so often". We have almost lost him so many times due to illnesses. Jason has a will to be here and God has looked after him and brought him and us through it all. Yes Jason is turning 5 - he doesn't eat on his own, he is in nappies and he doesn't talk BUT he is such an example to us. Through everything he has been through he is still such a happy little boy and tries his best at everything. He doesn't complain when we go to hospital every 3 weeks for polygam. He doesn't cry and carry on when every 3 weeks they stick a needle in his arm for his drip. He goes to hospital with a smile on his face and deals with it.
I am sure you are all wondering how Jason feels about his little sister, Nicole?? Well he loves his sister so much - there is no jealousy what so ever which is fantastic. He gets so excited when he comes home from school to see her, runs to her cot and says hi to her, pats her on the head or gives her a kiss. He watches me feed her and burp her and when she burps or poops he lets out this HUGE hearty laugh and laughs at her calling her a "pig" and shouting "poop" or "burp". When we were in hospital he got such a shock seeing me with a drip in my hand because he was always the one in hospital with the needle in his hand. Nicole was born a great size - 3.9 kgs. A huge difference from Jason's 1kg. It's so wonderful and strange having such a big baby that drinks her bottles so nicely, that has tears (Jason has never had tears) and has solid poos (Jason has never had a solid poo). Everything is new to us with a full term healthy baby.
So that's the latest news and events and thoughts in the Long household. Jason is so well and so good. He is the light of our life and we thank God every day for him. Who knows what his future is going to be with eating, communication and school but we are taking things one day at a time and I know God is watching over Jason and us and I have faith that God will open the doors and show us the right direction to take.